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.
Subscribe to get new posts directly to your inbox:
Beaudin’s Cancer Story
Beau’s cancer story
A overview of Beadin’s cancer journey for new readers. … Continue reading Beau’s cancer story
Keep readingTop Posts:
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 first pediatric CAR T-cell therapy patient. This Emily, referred to as simply “Emily,” is…
Keep reading
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 night before the ball. Many families wanted to meet him and as such short queue…
Keep reading
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 of denial. I despise shopping, DESPISE, so, sure, I had poked around one local store,…
Keep reading
Dear Beau, on the day of your last L.P.
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
Here’s to less weight in 2020!
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
Induction
Integrative Choices Part 1: Food
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 readingMeeting Deb.
(Photo by Joel Blocker, for UCHealth) The first time Deb drew Beau’s labs, she sat with him for a full 20 minutes before she even brought out a needle. She let him ask 158 questions and moved slow around the…
Keep readingA.L.L. Induction- a technical review
Induction is 29 days. It is the first phase of frontline treatment. Frontline is the initial portion of the 2-3 year treatment for acute lymphoblastic leukemia. Days Spent Inpatient: Days 1-4 for beginning treatment, Day 7-18 to treat a staph…
Keep readingthe inevitable nature of snowflakes
The sun wasn’t much past rising. All the snowflakes in the air reflected the light in a way that made it seem later than it was. I walked into the dark kitchen and looked out the window and paused. The…
Keep readingCold, hard facts about A.L.L and Induction
I normally blog as a narrative, but with all the details of what’s going on, I thought it may be worth laying out some more details in a more expository fashion. It’s outside my comfort zone. That is for sure.…
Keep readingRushing into forever.
He didn’t give me time to adjust the lighting. I wanted the moment to be captured. Surely with a photo, but maybe even on video. I wanted to make sure everyone saw how bravely he took the clippers to his…
Keep readingConsolidation
How to Shovel Snow
I worked for over an hour to clear the drive way. The snow storm had come and gone and left behind six inches of wet, heavy spring snow. The kids had been home from school for the second day in…
Keep readingA.L.L. Consolidation- a technical review
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 readingInterim Maintenance 1
Interim Maintenance- a technical review
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 readingDelayed Intensification
Delayed Intensification- a technical review
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 readingInterim Maintenance 2
Interim Maintenance 2- a technical review
Interim Maintenance 2 is 56 days. It is the fifth and final phase of frontline treatment. Frontline is the initial portion of the 2-3 year treatment for acute lymphoblastic leukemia. Days Spent Inpatient: NONE! Except for the visit to clinic…
Keep readingMaintenance
We have worked [518 days] without an accident.
*I gave pause before publishing a post with such profanity, but it’d be inaccurate any other way….* For 518 days we have avoided the curious toddler from getting in to the slew of dangerous medical items passing in and out…
Keep readingPrivacy concerns.
I have a post that I can’t finish. Part of the reason is that I don’t know what else to say, but I know it is not complete. It just hangs there with more to be said and no words…
Keep readingWhat Leukemia looks like now: Day 287 Part Two
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 readingRelapse, CAR T-cell Therapy
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… Continue reading Believe Ball 2022
Rebuilding & reckoning: where to go from here
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
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… Continue reading It’s hard to convey, a CAR T essay
The Heavy Wait 