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
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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 a place holder than a printing press, I remind myself over and over. So fine,…
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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 is an embellished version of my recent correspondence. I sent a fraction of what is…
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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 the evening I saw people walk up to Beaudin and shake his hand, remarking, “It…
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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…
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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…
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Induction
Integrative Choices: Nutrition
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 readingHer 20,000 to our 25.
In the days after Beau’s diagnosis, Josh and I would deliver a laundry list of questions and clarifications to the doctors when they came by our hospital room on their daily rounds. One day in particular, Josh asked about 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: Symptoms we had: Symptoms…
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…
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We have worked [518 days] without an accident.
For 518 days we have avoided the curious toddler from getting in to the slew of dangerous medical items passing in and out of our house. Vials of blood thinner, injection needles, liquid chemo, pills of steroids, all have passed…
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
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,…
HuCART: Month 16 results or something.
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…
The (well?) adjusted sibling- Part 2
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,…
The Heavy Wait 