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.

HuCART: Month 9 results

Earlier this month Beaudin and I traveled to CHOP for his 9-month post HuCART testing. It’s been impossible to write about. Not because the trip to Philly was that out of the ordinary, but because the weeks leading up to…

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Two too many.

In the last two weeks I have received two texts from two families telling me that two new cancer children are in heaven. It’s two too many. The texts read the same. “He is in heaven.” “She is in heaven.”…

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A birthday doctor’s call

I hadn’t thought through that it would be his birthday when I confirmed the phone call with her. I guess when your son’s doctor says they need to speak to you, you don’t exactly “look at your calendar,” you just…

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Swiftly Kicked in the Stomach

*This is one of many posts that mentions our sweet friend Emily. I have made a separate category for the times I wrote about her. If you would like to read more about her, please click on the category “Sweet…

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HuCART: Month 6 results Part 2

Catch up on Part 1 here. Jude didn’t want to be alone while he was in and out of throwing up. He was scared. Joshua and I took turns laying with him and assuring him he was going to be…

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HuCART: Month 6 results Part 1

*unedited, sorry for typo’s* Part 1- LP results On Tuesday Beaudin had his 6-month, post HuCART procedures. As you’ll recall, his b-cells retuned in late December and despite returning to Philly and doing a boost in January, continued to come…

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HuCART: 6 month CHOP visit part 2

You can read Part 1 of this update: Here. The benefit of a visit to Philadelphia without any procedures was that we got to have an in-person conversation with the CAR team. We are at a fork in the road,…

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HuCART: 6 month CHOP visit part 1

Part 1 We are back from Philadelphia with everything and nothing to show for it. We had expected to have Beau’s 6 month LP and BMB performed, but the procedure didn’t happen because of a cold that he had been…

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Beau’s cancer story- the quick and dirty.

I wanted to get the high-level of Beau’s story in one post so that a newly diagnosed, or newly relapsed cancer, parent could have a single place to read about it. Would I like them to read every post I’ve…

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Results and a podcast!

Well. The boost didn’t work. I suppose there is a more poetic way to say it, but I mean, are we not just about over trying to make a story out of this slog? Oh, just me? Ok, fine, I’m…

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Empathy once desensitized

I did the thing. The thing people do when they’ve become medically desensitized to pediatric cancer. The thing that when you are freshly diagnosed feels like something you would never, ever, be capable of because there is no way that…

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Breaking News: [this] creates more mysteries.

There was an interesting news article floating around yesterday that I wanted to share. The article is a high-level summary, a feel good story, of two patients who received CAR T 10+ years ago, when the treatment was even more…

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Same Island, Less Denial

Our trip to Captiva, November 2021. Denial Island hit different this year. Last year we packed up and fled to denial island days after hearing that Beau had most likely relapsed and that we would be spending 28-days inpatient starting…

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Home again, Home again.

Beaudin and I arrived home late last week and we are SOOOO GLAD TO BE HOME. Pardon while I shout it from the rooftops. Nothing like a couple solitary weeks in Philly to make you come home and drink in…

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HuCART Boost Day 4: a whole lot of nothing

I always have big intentions to come to Philly and in all my “spare time” do so much blogging/writing that I finally feel caught up. But as it would turn out, I will never feel caught up. I could write…

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HuCART Boost- Pre-chemo Part 2

Part 1 can be found here. My mind feels foggy. Like I have a hyper focus on the smallest of details, and yet the inability to focus on anything. I turn on the tv and watch endlessly while I can’t…

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HuCART Boost- Pre-chemo Part 1

Part 2 can be found here. Here we are again, back in the city of brotherly love. To be honest, it always feels a little bit like coming home when we arrive in Philly. The body finding its ways inside…

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HuCART Day+129: January in Philly

This week at Beaudin’s lab check, his b-cells were at 6%, up from 2.7% last week. So, we return to Philly. We boost. All January plans, flipped on their head. Doing something comes more freely to my spirit than waiting…

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HuCART Day +119: 2.7% b-cell return

An update. Beau had clinic on Tuesday. Unfortunately, his labs showed a b-cell return of 2.7%. This may indicate his t-cells are fading, but it is not considered an “official return” until b-cells return at >3%. B-cells levels have been…

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HuCART: Month 3 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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HuCART: Month 3 trip to Philadelphia

Tomorrow Beaudin and I will travel to Philadelphia for his Month 3 tests. This will include a bunch of blood work that includes, but is not limited to, checking for b-cells in his peripheral blood, a bone marrow biopsy to…

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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 +5: 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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HuCART 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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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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