Beaudin completed CAR T Therapy at Children’s Hospital of Philadelphia in March 2021. Unfortunately the T cells did not persist and were showing return on Day 28.
In August 2021, Beaudin returned to Philadelphia for a Humanized CAR T trial. That round lasts for 4 months before the T cells began to fade in December 2022. He received a cell boost in January 2022 that was unsuccessful.
We have chosen to take a “wait and watch” approach as he has been NED (no evidence of disease) since the original CAR T in Spring 2021. As of December 2022, he remains healthy and strong.
You can read about Car T therapy here and Humanized Car T therapy here.
Posts on both CAR T and HuCAR T can be found below.
HuCAR T: 18 month follow-up- Half Truths and Tug of War.
I wake-up early and sneak out of the dark hotel room. I make my way to the lobby to enjoy the complimentary coffee and read my book. If I position myself just right on the couch in the far corner…
HuCAR T: 18 month follow-up- Living Jude’s Best Life.
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…
Lemonade & Paparazzi
Our mission is to change the lives of children with cancer through funding impactful research, raising awareness, supporting families and empowering everyone to help cure childhood cancer. Alex’s Lemonade Stand Foundation Last fall, after our 11th or so flight to Philadelphia,…
for now, we aren’t running.
We went to bed on Wednesday night resting easy. The news from our last visit was slowly starting to settle. We got the initial results the day of the appointment, but the official “all-clear” came the next afternoon, once I…
Clear. Colorless. Beautiful Champagne Poke.
Jude woke-up for the first time in weeks without complaint that it was morning. I laid down next to him and showed him the two small, wooden ram figurines that my friend had gifted me after relapse. “These little guys…
For today, an LP.
Beau is going to have an LP (lumbar puncture) this morning to sample his spinal fluid for rogue cells. I know, I know. It feels out of no where with all the “New companion!” excitement of my last post. I…
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…
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…
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…
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 (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…
A 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 days of low fever and fatigue. Joshua and I both…
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…
Beaudin 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 based on the documentary film we got to view the…
Preparing for a Ball
I waited until three days before we left for Philly to come to terms with the fact that I would have to find something to wear to my first ever ball. It’s one of my worst traits, this specific variety…
Believe Ball 2022
This weekend we attended the Believe Ball put on by the Emily Whitehead Foundation (EWF). As I have mentioned in previous posts, the EWF is a large part of why we were able to get Beaudin connected with CAR T…
It’s hard to convey, a CAR T essay
Today the kids are back at school. Every last one of them. Praise Be. If you’ve been here a minute you know that we have been here, there, and everywhere as far as school goes. Starting at one school, leaving…
Every Damn Day
The other night over dinner a girl friend and I listened while our friend, Sarah, recounted a scary medical thing that had happened with her young daughter earlier that day. Both her daughters, now 9 and 7 years old, did…
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…
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…
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…
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…
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.…
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…
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…
HuCART Day -3: Weekends are for the country.
This past weekend we set out to find some good ole’ nature to dip our toes in after 5 full days in the big city. City life is a trip. It’s so hot and so humid and while I am…
HuCART Day -4: For the sake of the roadmap to freedom.
A long time ago, back when I thought this would surely, surely!, be a simple and quick, straightforward little leukemia stint, I had an, oh so humble, little thought that I would write about our experience and it would be…
Dear Beau,On what should be your first day of school. 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…
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…
3 month post CAR T check-up: A Quick Trip to Philly- Part Two
Read part one here. Less than 48-hours we were back in Denver and my mom was driving us home from the airport. I checked the MyChart app to see if Beaudin’s blood/lab results had posted. When I opened the app…
3 month post CAR T check-up: A Quick Trip to Philly
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,…
Car T Day +86: IVIG, fever, and baseball.
I am wondering when I will stop counting up from March 29th (1st CarT transfusion day) as the basis of where we are at on this long, winding road. I suppose I could say we are: Initial Diagnosis Day +887…
Three doctors walk into a bar: second T-cell collection
Last week Beaudin had his t-cell apheresis completed locally at our hospital in Denver. Beau had his cell collected. He rocked it. He said the PowerWand line placement was a 2 on the 1-10 pain scale. Which says a lot…
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. He was asleep, I should leave well enough alone. But I wanted to end the night…
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…
CAR T Day +65: the three year old brain and moving on from the boost option.
Yesterday we were finally able to connect with the CHOP team and make a plan on how to approach Beaudin’s early b-cell return. We had played phone tag much of last week and finally on Friday afternoon I declared triumphantly,…
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…
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…
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…
The liminal space between trauma and healing.
It’s fine, I’m fine, everything is fine. No, really. I want to write about this and I also can’t bare to have you read along and worry that we got bad news. All the news we have so far is…
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…
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…
CAR T Day +15: Baseball practice and my brother.
As Beaudin’s body continues to recover from the chemo and the CAR T infusion, he feels better and better. At our last clinic visit his ANC was up to 1100 which allowed Joshua and I to exchange “woot!” and then…
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…
CAR T Day +5: Fever watch
Fever update: Man, watching a fever rise/fall/hold is something I will NOT miss about this circus. Of all the stresses of cancer, the waiting for symptoms to progress is a real drain. It feels like an extended fight or flight…
Daily Dose: April 4th, 2021
Waiting for a CarT reaction, mild fever, mild headache, and a softball game.
CAR T Day +3: IVIG and waiting
Medical update: Last week, Beaudin received 4 days of high dose chemotherapy to kill off his healthy B-cells in order to make room for his new T-cells. He was tired, but not overly so. His appetite diminished, but really, I…
Daily Dose: March 25th, 2021
There feels like so much to write and yet nothing to say. I’ve tried to write this update a couple times and find myself all over the place. There is a lot happening on the schedule and even more emotionally.…
Daily Dose: March 16, 2021
In January the boys started attending a local public school. I keep meaning to write on that, update the masses about our pivot from homeschool to public school, but haven’t yet. So I will dive right in here to detail…
Daily Dose: February 27th, 2021
Dates for CarT in Philly. Who is coming, who is staying, and why I can’t stop, won’t stop writing first drafts.
March 22, 2021. It remains.
How is it that treatment was meant to end and now CarT cell therapy begins on the exact same day? Read more.
Daily Dose: February 10th, 2021
Back at clinic in Colorado after signing on to the CHOP study. Maintenance chemo and a bit of crying to the doctor.
48 hours in Philadelphia
Recap of the 48 hours trip to Philadelphia to sign consent paperwork for the CarT trial.
Daily Dose: January 21, 2021
Exciting update on Car T treatment, and 2021 being the year that this all ends.
A mom’s understanding of CAR T Cell Therapy.
A high-level overview of CarT therapy from a mother’s perspective.
Daily Dose: January 5, 2021
Consultations and baseline measurements for the upcoming t-cell collection. A long, long hospital day.
Daily Dose: January 4th, 2021
Update 1/4/21- Apheresis team consult and vein discovery and lots of unapproved snacks.
The Heavy Wait 