In January of 2019 our family’s story took a hard left turn and we found ourselves hurdling down the pediatric cancer path. Slowly, we found our footing, then 4 months before the end of treatment, November 2020, we experienced relapse and were thrown back into unknowns.
At 6 1/2 years old Beaudin was diagnosed with Acute Lymphoblastic Leukemia- January 2019. He received treatment at Children’s Hospital of Colorado following the COG 9032 protocol. In November of 2020, 20 months into 26 months of treatment, Beaudin relapsed in his spinal fluid. He did bridge chemo of intrathecal triple lumbar punctures bi-monthly, and continues his maintenance daily at home chemo, 6MP and Methotrexate. until the end of March 2021, when we traveled to Philadelphia to participate in a research trial for CAR T therapy.
After CAR T, he participated in a HuCAR T trial in August 2021. Though his b-cells returned at month 4 post HuCAR T, as of June 2022 all tests show that he is cancer-free.
I started this blog as a way to process the good, the bad, and the ugly of our life with cancer. Overtime, other parents with children with cancer started reaching out, saying that the posts were offering them clarity, comfort, and hope. There could be not greater gift to me, no great salve in my wound than to know that my words could offer even a moment of respite.
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Beaudin’s Cancer Story
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 first pediatric CAR T-cell therapy patient. This Emily, referred to as simply “Emily,” is…Keep reading
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 night before the ball. Many families wanted to meet him and as such short queue…Keep reading
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 of denial. I despise shopping, DESPISE, so, sure, I had poked around one local store,…Keep reading
Dear Beau, When you were diagnosed, one of my biggest worries, for us both, was your fear of needles. You had so much fear over them that even the most simple blood draw would require many adults holding your body against your will. Actually, I recall a moment early-on, one of the first times we…Keep reading
If you want to loose weight this year, I’m with you. I know. It’s so uncouth. The Body Positivity and Female Empowerment movements would have my head. It’s not about weight! Love the skin your in! I’ve seen social media plastered with these messages for the last couple of weeks. And I agree. It’s not…Keep reading
There are a million and one different ways to help support your child’s body while experiencing Leukemia. Ranging from fleeing to Mexico and finding a holistic cancer clinic to indulging on hospital cafeteria milkshakes at every appointment, the choices are…Keep reading
Consolidation is 28 days. It is the second phase of frontline treatment. Frontline is the initial portion of the 2-3 year treatment for acute lymphoblastic leukemia. Days Spent Inpatient: NONE! (oh sweet baby Jesus!) Medical details: 3 intrathecal chemo doses…Keep reading
Interim Maintenance 1
Interim Maintenance is 56 days. It is the fourth phase of frontline treatment. Frontline is the initial portion of the 2-3 year treatment for acute lymphoblastic leukemia. Days Spent Inpatient: NONE! (oh sweet baby Jesus!) The PTSD of Induction is…Keep reading
Delayed Intensification is 56 days. It is the fourth phase of frontline treatment. Frontline is the initial portion of the 2-3 year treatment for acute lymphoblastic leukemia. Days Spent Inpatient: NONE! Thankfully. Medical details: 2 intrathecal chemo doses via lumbar…Keep reading
Interim Maintenance 2
Continued from this post: https://summerofsilence.com/2019/11/05/what-leukemia-looks-like-now-day-287-part-one/ Lifestyle: Sauna: 3-4 times a week Beaudin (And Jude) take a 20 minute, 130 deg sauna. We found a like-new, but priced-used (win!) Near-infrared sauna on Craigslist this summer and although it’s not the most…Keep reading
Relapse, CAR T-cell Therapy
Sometimes, well most of the time, I start writing exactly where I left off. And by left off, I mean left off of the train of thought in my own head. How is it all you keep up? Alas, you… Continue reading Rebuilding & reckoning: where to go from here
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… Continue reading It’s hard to convey, a CAR T essay