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 January 2023 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
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 a place holder than a printing press, I remind myself over and over. So fine,…Keep reading
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 is an embellished version of my recent correspondence. I sent a fraction of what is…Keep reading
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 the evening I saw people walk up to Beaudin and shake his hand, remarking, “It…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: Symptoms we had: Symptoms…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
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,…
All I want to do is publish this damn post. And every other damn post I’ve been (mentally) composing for weeks now. But each time I open my laptop- I write a bit and link a bit, and search around…
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 new one. You see,…