A mom’s understanding of CAR T Cell Therapy.

I thought I’d give some context to what CAR T-cell Therapy is and why it is the treatment option we have for Beaudin. This may serve the weary grandparents, eager to know what exactly is happening to their grandchild and the science buffs, more than the average reader.

If you want to cut right to the chase and watch a couple 3 minutes videos on the topic, scoot to the bottom of this post and you’ll find some easy to digest YouTube links on CAR T therapy.

CAR T-cell therapy is a cutting edge dynamic of cancer research that is really, quite amazing. Not amazing, like the overused descriptive word, but rather amazing like just consider the possibilities and marvel in awe.

So What is CAR T-cell Therapy Anyway?

Bascially (oh so basically) the body has a germ fighting army called T cells. When the T cells identify a cell that is diseased, they latch on to it and spew out toxic chemicals that kill said disease. With cancer, but specifically B cell Acute Lymphoblastic Leukemia, the cancer cells get smart and start morphing themselves to appear like average, everyday B cells. (B cells are also a good part of your immune system used to ward off invading bacteria and viruses.) So when the T cells storm through to rid the body of disease, they see the B cell mimicking Leukemia and misinterpret it for a normal B cell. Who’s following? The way our doctor explained it is that T cells know that B cells are the good guy. So imagine, B cells are purple. T cells know not to poison and kill purple cells. The leukemia gets smart and says, “Hey, lets be purple too!” So they become light purple. The T cells then see purple, and start letting them go free as they believe that purple cells are good guys.

Obviously the cells aren’t really purple. Or are they….. Can we ever REALLY know…. Anyway, the cells aren’t purple. The purple color merely represents the identifying markers that the T cells scan for. CAR T Therapy is the process by which a host of T cells are collected from the patient (For us, over 2.5×10^9, that’s billion.) and are send to a lab where through the MARVELS of modern medicine, they are taught to fight cells differently. So instead of ignoring the light purple B cell Leukemia, they seek to destroy it.

So What’s the Downside??

Not without it’s own set of troubles, because let us not forget that nothing after the words, “It’s cancer,” is without it’s fine print. The T cells are re-engineers to to target malignant B cells building onto them a new piece called the Chimeric Antigen Receptor (CAR…. Get it, CAR T cell…. CART), And it gets to work quick. Early evidence shows that the remission rate after reintroduction of the CAR T cells is upwards 95%. The numbers do not stay that high, and I can’t quote to success perfectly, but after 12 months it is give or take similar to the rates if you tried another go at standard chemotherapy and radiation, of which the survival rates are 70%.

So what are the downsides?!?! Well, after the cancer is gone, gobbled up and poisoned by the new, better, stronger, smarter CAR T cells, those same CAR T cells are kind of like hyped up soldiers who are so eager that they just keep seeking out things to kill. So, they keep finding and attacking everything purple. But recall earlier? Yes, the Leukemia is purple, but so are the healthy B cells. So the CAR T therapy inherently leaves the patient without B cells. Actually, the way they measure the efficacy of the therapy is to measure the B cells. Because if the B cells are not present then we can presume that the CAR T cells are still seeking out all the purple. This is well and good for around 12 months, which is the current timeline that doctors like to see to ensure “deep remission”, but after that, well, just like after any battle, it’d be nice if the soldiers would stop fighting.

To compensate for the lack of B cells, the patient receives an infusion to help their immune system. Some patients received this infusion monthly or quarterly for years following the therapy. This science is new and ever-changing, but one article I came across addressed this exact topic with the idea of turning off the CAR T cells eventually. That is still far off, but it’s interesting to consider. You can read about that more here.

Additionally, when the CAR T cells are infused and go to work slashing and burning all the purple they see, the patient can experience what is called a “cytokine storm” as all of the tumor cells die-off. These symptoms can run the spectrum from mild nausea and headache, to more serious stroke-like experiences. Most require a hospital visit, and some require care in the ICU. Luckily, as the science continues to develop, so do the modalities by which they handle to cytokine reaction. Also, since the tumor load for Beaudin specifically is still quite low, they would expect him to experience the “lesser reactions” end of the spectrum. Nothing can be guaranteed however, so for 3-22 days post infusion, you are required to stay within 20 minutes of the hospital.

CAR T Therapy as a Path Forward

CAR T cell therapy is part of rapidly growing area of cancer treatment research focusing on immunotherapy. The idea that the body is capable to fight the cancer on it’s own, given a little boost, rather than the historically single option of chemotherapy which is basically akin to setting everything on fire and hoping the good cells come back. Immunotherapy is a very new science, and because of that there is not as much research backed statistics as there are with chemotherapy. That being said, the statistics are very favorable, as are the side effects.

Normally, the introduction of new science is applied to the patients who have the fewest options left. For example, if a child is diagnosed and they have a known chemotherapy regimen that offers a 94% remission rate, there isn’t a lot of likelihood a parent would choose the option of a study with so many unknowns. Because of this, many of the patients that receive CAR T cell therapy are the ones with few to no standard chemotherapy options left, either because they have met their lifetime limits in the chemotherapies, or their cancer has become chemo resistant. As such, the statistics, while favorable, come from a subset of very ill patients with very aggressive subsets of Leukemia. These children have relapsed 3 to 4 times and endured many years of fighting.

The (layman) idea with the study we are hoping to join is to understand, ‘What if we didn’t wait until the child was out of options? What if we didn’t wait to see if they had the very, very, rare subset of aggressive Leukemia? What if the moment we saw that standard chemotherapy wasn’t successful, aka the first relapse, we introduced this as a final blow to the cancer?’ The early statistics and anecdotal evidence suggest that this path is a better way to treat relapse, but they don’t have the scientific backed evidence to support it, and as such, they cannot change the roadmap applied by the powers at be. This study will allow data to start being gathered to say, “Hey, there is another way to treat relapsed Leukemia that doesn’t include years of harsh chemotherapies, radiation that has very enduring side effects, and offers the child a path forward that doesn’t corner them, like chemo/radiation would, into a life with high rates of secondary side effects and future cancers.

Anyhow, I imagine I will have to come back and edit this article often as I, myself, learn more about the CAR T process. If we are able to join the study in Philly, still waiting on insurance…… we will have a meeting with their team to read all the fine print and sign consents, and I am sure my understanding will continue to grow. But this is the gist. The layman, just a mom of a cancer kid, trying to make sense of it all, assessment of new science.


I am not sure I can answer them, but Lord knows I would adore a try. I’d love to know what questions you still have about Beaudin’s treatment specifically, please comment below!

Links, Videos, Articles:

Here are a couple YouTube links that you may find easier to understand that my pages of words.

A deep dive into CAR T pediatrics with Dr. Grupp from CHOP. This is likely too much for a layman, but it is amazing for a CAR T parent, very dense, VERY informative!

CAR T-Cell Therapy: How Does It Work? 2:20min– An overview of how and why T cells can be used for CAR therapy.

Manufacturing CAR-T Cell Therapies: The Novartis Approach 2:13min- Details on the actual manufacturing process of re-engineering the T cells.

Restoring the Immune System, Post CART therapy- An article that details the emerging science of turning “off” the CAR T cells once treatment is completed.

How Do People Catch a Cold? 🤒 Ask the StoryBots FULL EPISODE | Netflix Jr- This is a great option for kids to have a little better understanding of how the immune system functions. It doesn’t speak to cancer, but it does introduce T cells.

8 thoughts on “A mom’s understanding of CAR T Cell Therapy.”

  1. Just catching up on your posts…so grateful for your writings, Betsy, although I can only imagine the effort in doing so. It’s, I’m sure, a kind of personal release in a way…but nonetheless a bit of a feat. Beau’s smile is so beautiful! What a brave little guy. I am praying for you all on this road. The science is truly amazing. Hugs to you all with love, hope, peace, strength.


    1. Thanks for reading along JoAnn. It is a bit of a release to write about all that’s happening, helps me process it for sure!
      Glad to see any comments too, so I know I am not just writing into thin air. 🙂


  2. From the Meemaw – thanks for always writing what I Am sure people are wondering about. Your writings always give a true and honest perspective. 💕💕


  3. God bless you Beau and your family. May the good Lord keep you and fill you up to the brim with strength and resilience. as a mom of a child who fights ALL reading this blog gave me.a.detailed and thorough description of what’s ahead. i loved reading not just for information, but also for inspiration. it always filled me.with so much hope, because you guys did not put life on the back burner while fighting ALL, you’ll still lived to the fulles with soccer games and bike rides. inspite of relapse you still inspire hope, i pray God keeps that hope fire burning in all of you. God bless you and keep you and preserve you for many years.


  4. Thank you so much for the updates Betsy. I am praying very much for Beau and your family. I remember how comforting you were when Jennifer and I were at that hospital with a very sick child and you came with beautiful gifts and brought us great comfort. I will never forget your kindness and love in our hour of need.
    Millie (Jennifer’s mom)


  5. Thank you for writing this. Your NY Times comment led me here. Your experience reminds researchers to keep looking for answers to the complexities underlying side effects and failures — the successes are each a joy. And the errors are each an essential lesson. (And thank you also for the Roosevelt quote.) Warm wishes from a genome scientist in Southern California.


    1. Hi Terry, thanks for reading, and more so, commenting. I imagine my layman’s explanation is an interesting perspective! I always am excited to get new readers from all spectrum of experience. Be well, xx


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