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.
Delayed Intensification lasts 56 days and is the fourth 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.
Thankfully.
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Medical Details
- 2 intrathecal chemotherapy doses via lumbar puncture
- 8 doses of IV-administered chemotherapy: Vincristine, Pegaspargase, Cyclophosphamide, and Doxorubicin
- 8 subcutaneous chemotherapy injections: Cytarabine (ARAC)
- 14 days of oral chemotherapy: Thioguanine
- Approximately 1 week spent neutropenic
- 7 clinic visits
- 8 local lab blood draws
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Chemotherapy / Treatment Symptoms We Had
Hair Loss
It finally happened, just as everyone said it would. After Beau’s third and final dose of Doxorubicin, his hair thinned to bald. As soon as it started coming out everywhere, we shaved it down short and within two to three days it was all gone.
Fatigue
Damn steroids. During his two five-day steroid pulses, Beau’s fatigue was significant. Any time he wasn’t being asked to do something specific, you’d find him laying on the couch, the floor, the bed—wherever gravity pulled him.
Reaction to PEG
On Day 4 of Delayed Intensification, Beau received his second (and final) dose of Pegaspargase (PEG), which is known to cause reactions in a large percentage of patients. Beau did have a reaction, but it was due to a rapid release of ammonia into the bloodstream, which can mimic a true allergic reaction. After a high dose of Benadryl and a saline bolus, they were able to re-administer the medication.
Because of the reaction, his antibody levels were checked at Days 7 and 14 to ensure the medication was effective and not immediately cleared by his body. Thankfully, the labs confirmed that the PEG did its job.
Patichaeae
Near the end of Delayed Intensification, I noticed tiny red dots on Beau’s back—what we had been warned might appear as petechiae. They’re small red or purple dots that indicate broken capillaries, essentially tiny bruises caused by bleeding under the skin. They’re expected with low platelet counts, which is common during this phase.
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Chemotherapy / Treatment Symptoms We Missed
Infection/Fever
One of the biggest concerns during Delayed Intensification is Weeks 6–8, when blood counts are at their lowest. A low ANC increases infection risk, and infection means fever—which means an urgent trip to the ER. Also, one of the Chemos this month has fever as a side effect. Even as a listed side effect, any fever with a central line is treated the same. At most facilities, if you have a fever, a port, and zero ANC they will admit you until your counts recover. This can means that a DI fever will results in 2 weeks inpatient. Despite being neutropenic for around 14 days (ANC hovering near zero), Beau did not develop an infection and we avoided the ER.
Nausea
You could argue we missed this, though appetite loss is sometimes considered nausea. Beau didn’t have distinct nausea during DI. We followed guidance from our naturopathic oncologist closely—ginger, acupuncture, Sea-Bands, and more. When his ANC was low, his appetite dropped significantly, which may have been nausea. Our team explained that some kids say they’re “not nauseous” simply because they aren’t vomiting, even though what they’re feeling would register as nausea to an adult.
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The Hardest Part of Delayed Intensification
The waiting.
Waiting for a fever.
Waiting for an infection.
Waiting for an emergency trip to the ER.
At one point I found myself thinking, let’s just get the fever and get it over with, because the suspense of waiting felt more exhausting than the thing itself. It was like walking around a dark room, knowing someone is waiting to jump out and scream boo.
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Biggest Surprise of Delayed Intensification
Most of me wants to wallow in how terrible DI was. It was hard. It was exhausting. It was long. I’m just glad it’s over.
But if I have to name a surprise, it would be how well Beau handled Cytarabine (ARAC). I was nervous about how he’d tolerate another semi-permanent access point, but he did fine. When we administered the injections at night, his only complaint was that it “kind of stung,” said without much emotion—suggesting it was minor at most.
He has come so far in his confidence and endurance with needles, pokes, and prods. I wish I could sing that as praise, but right now it mostly feels heavy that he’s had to endure so much.
Another unexpected surprise: Joshua and I went on more dates during DI than we had in the previous eight months combined.
How? I don’t fully know—except that we found an incredible, consistent babysitter. Even then, the dates weren’t exactly restful; cancer still filled the conversation. But we were outside our four walls, breathing fresh air, together.
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Additional Notes
Delayed Intensification is over. THANK GOD.
And yet, frontline treatment continues.
I was surprised by how little relief I felt when DI ended. From diagnosis onward, everything had been framed as before DI or after DI. Doctors measured difficulty by comparing it to DI. So to endure DI—every bit as hard as expected—and then realize there was still so much road ahead was deflating.
I had naïvely imagined finishing DI, exhaling deeply, and coasting into the sunset. Instead, we stepped straight into another phase of frontline treatment: Interim Maintenance II. And while IM2 has been infinitely easier than DI, it’s still chemotherapy.
No rest for the weary.
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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 Lumbar Punctures (LP’s) that Beau would be getting throughout the course of his treatment.…
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