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
Beau’s cancer story- the quick and dirty.
I wanted to get the high-level of Beau’s story in one post so that a newly diagnosed, or newly relapsed cancer, parent could have a single place to read about it. Would I like them to read every post I’ve…
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Chemical Sleep and Bon Voyage
The day Beaudin had his port put in, January 19th, 2019 a fellow met us in the surgery waiting room and asked if we would be willing to sign Beau on for a study that was seeking to understand the effects of methotrexate on kidney function. All we had to do was sign the last…
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Dear Beau, on the day of your port removal,
Dear Beau, Last night you scored the winning run of your baseball game. I cried hot tears as you ran across home plate and into the dugout where your teammates crowded around you, everyone estatic. You struck out earlier in the game and were so down on yourself. The game had been a nail biter…
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HuCART: Month 9 results
Earlier this month Beaudin and I traveled to CHOP for his 9-month post HuCART testing. It’s been impossible to write about. Not because the trip to Philly was that out of the ordinary, but because the weeks leading up to it were surreal. In late April dear Kamden passed away, and then a week later…
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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 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…
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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
A birthday doctor’s call
I hadn’t thought through that it would be his birthday when I confirmed the phone call with her. I guess when your son’s doctor says they need to speak to you, you don’t exactly “look at your calendar,” you justContinue reading “A birthday doctor’s call”
Swiftly Kicked in the Stomach
*This is one of many posts that mentions our sweet friend Emily. I have made a separate category for the times I wrote about her. If you would like to read more about her, please click on the category “SweetContinue reading “Swiftly Kicked in the Stomach”
HuCART: Month 6 results Part 2
Catch up on Part 1 here. Jude didn’t want to be alone while he was in and out of throwing up. He was scared. Joshua and I took turns laying with him and assuring him he was going to beContinue reading “HuCART: Month 6 results Part 2”
The Heavy Wait 