Consolidation in Pediatric ALL: When Things Feel Almost Normal (and That’s Its Own Kind of Hard)
This post reflects our experience under the Children’s Oncology Group (COG) protocol 9032 for Standard Risk acute lymphoblastic leukemia. Treatment plans vary. Always consult your child’s care team for guidance specific to your child.
Consolidation lasts 28 days and is the second phase of frontline treatment. Frontline treatment refers to the initial portion of the 2–3 year course of therapy for acute lymphoblastic leukemia.
Days Spent Inpatient
NONE.
(Oh sweet baby Jesus!)
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Medical Details
- 3 intrathecal chemotherapy doses via lumbar puncture, administered weekly
- weekly clinic visits
- 1 dose of IV-administered chemotherapy
- daily oral chemotherapy at home
- 28 days of twice-daily blood thinner injections related to Beaudin’s blood clot (see Post Script below)
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Chemotherapy / Treatment Symptoms We Had
Headache
Beau had one headache this month. Because this whole cancer train left the station with a fever and a headache, we were concerned. We called the on-call oncology doctor, who wasn’t worried. Two doses of Tylenol and it resolved.
Bruising
Beau has extensive bruising from the blood thinner injections. We rotate sites between the backs of his arms and the tops of his thighs, and he is pretty black and blue everywhere. Doctors confirmed this is “normal” bruising. We’ve been applying arnica daily, hoping to speed healing, though with injections every other day per site there isn’t much downtime.
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Chemotherapy / Treatment Symptoms We Missed
Hair Loss
Beau’s hair has changed texture—almost bristly or wiry. Sometimes when the sunlight hits his buzz cut just right, I wonder if it’s thinning. Mostly, people keep saying, “Why does he still have hair?” It’s not unheard of to still have it at this point. Most likely he’ll lose it in this phase or the next. But there’s a small sliver of hope in me that the insanely thick hair I’ve had my whole life—and apparently passed on to Beau (the Burnett hair lineage is strong)—might carry him through as one of the few kids who doesn’t lose it completely. Time will tell.
Updated after the fact: Most children lose their hair after receiving Doxorubicin during Delayed Intensification.
Beyond that, I’m not sure of other specific symptoms we missed. This month was uneventful symptom-wise—both because Beau felt well and because there wasn’t much we were warned to watch for.
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The Hardest Part of Consolidation
Every Friday this month, Beaudin had intrathecal chemotherapy via lumbar puncture. This procedure is done sedated and requires Beau to be NPO (not having eaten).
On the second Friday, Joshua and I arrived early and grabbed smoothies from the hospital lobby. A dear friend had gifted us a gift card, and I wanted to snap a quick thank-you photo. While trying to get Beau to cooperate, Joshua offered him a sip of the smoothie. A literal sip. He spat it out and declared it disgusting.
Forty-five minutes later, at check-in, the nurse asked the routine question: “Has he had anything to eat or drink this morning?” When Beau mentioned the smoothie, I knew things were about to unravel.
Long story short: one un-enjoyed sip of thank-you smoothie delayed the procedure until Monday.
Retelling it now, it sounds like a non-event. In the moment, it was anything but.
Anger. Seriously? A quarter ounce of smoothie and we’re axed? Why did I want that dumb picture? Why did Joshua offer the smoothie? Why won’t Beau ever smile for photos? Why are these the rules? This is all so stupid.
Fear. Now we’re delayed four days—will treatment still be effective? Will this push him into the percentage of kids who don’t survive? Over a stupid sip of smoothie? What if he hadn’t mentioned it and he had aspirated?
Shame. What do the doctors and nurses think of us? The parents who fed their kid when he was supposed to be NPO. Are they mad? Do they think we’re stupid? This is embarrassing.
I was weeping hot tears as the doctors confirmed the delay. It shocked me how quickly a simple mistake launched me into such a dark emotional place.
This is my current grief: short fuse, muddled logic, zero self-compassion.
The nurse reassured us that this happens often—“a mistake you only make once.” Everyone was gracious. Even the anesthesiologist came by to say it was common. Our Monday procedure went smoothly, and the rest of the month passed without issue.
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Biggest Surprise of Consolidation
This month felt like a lot of “Are we missing something?”
Beau did great physically. Side effects were mild. His blood counts stayed high. We went swimming at the rec center, attended a week of school, and took a field trip to the Downtown Aquarium.
Things felt normal—in all the best ways, and also in all the confusing ways. Should we still be getting meals delivered? Should Selah still be in Montessori? Is this cancer? This feels too easy.
That’s one of the strange truths about cancer. Even when things are good, they’re good in comparison to how bad things have been—or how bad they could be. I wonder if that ever changes. Is there ever a good that doesn’t come with a backward glance toward disaster?
For now, we live in the comparative good.
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Additional Notes
Beau barely wore a face mask this month. As leukemia becomes more normalized to us, it’s hard to know what to be cautious about and when to relax. His nurse said they don’t recommend masking at school if counts are high enough to attend (ANC above 500), and that masks can become an unnecessary emotional barrier. We planned to resume masking if his ANC dropped below 500—or simply stay home more.
More than once this month we said, “If it weren’t for the blood thinners, it would be easy to forget cancer was a thing.”We were deeply thankful for this small reprieve.
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Post Script: Blood Thinners
Beaudin handled twice-daily blood thinner injections well while inpatient. Once we got home and filled the prescription at our local pharmacy, it was a different story.
The pharmacy provided standard pre-filled syringes with a much larger needle. Let me tell you about the screaming.
The next morning, I called pharmacies all over the county looking for a 26g ⅜-inch, 1 ml TB syringe and a vial of the medication—trying to recreate what had worked so well in the hospital. This was not easy. Pharmacists insisted that syringe size (normally used for TB testing) wasn’t appropriate.
After many pointed phone calls between our nurse and the pharmacists, it was finally approved and prescribed. It was a total game changer.
As it turns out, the needle size on a pre-filled adult syringe is measurably different. (Ask Beau.)
Please email me if you have questions about this.
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