Interim Maintenance I in Pediatric ALL

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Days Spent Inpatient

NONE.
(Oh sweet baby Jesus.) The PTSD of Induction is actually waning…

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Medical Details

• 1 intrathecal chemotherapy dose via lumbar puncture
• 5 doses of IV chemotherapy: Vincristine and Methotrexate
• During Interim Maintenance, IV Methotrexate is escalated based on blood results (more on this below). Beau began at 50 mg, escalated each time, and ended at 300 mg.
• 1 ultrasound to follow up on the DVT (blood clot)
• 5 clinic visits, 1 doctor appointment

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Chemotherapy/ Treatment Symptoms We Had

Diarrhea
After the first and second IV Methotrexate doses, Beau needed a couple urgent trips to the bathroom. Once on the way home from clinic. At a highway gas station. With dignity intact. Mostly.

Fatigue
The afternoon following clinic appointments, Beau was more tired than normal—sometimes an early bedtime, sometimes extra TV.

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Chemotherapy/ Treatment Symptoms We Missed

Vomiting
After Beau’s final (and highest) dose of IV Methotrexate (300 mg), he threw up daily for four days. It was over a weekend and we had plans to go to the Colorado Rockies game. We called the on-call doctor and got Zofran which mostly helped limit the vomit, but Beau was still lethargic the whole game. But damn it, cancer was not taking baseball from us! In the days that followed, the rest of us got sick too. Turns out it wasn’t Methotrexate. It was the flu. Apologies to everyone we exposed, we were righteous in our blame of the chemo 😄. 

Hair Loss
Beau’s hair is still going strong—actually long enough that he needs a haircut. Most kids who haven’t lost it by now will within the first two weeks of the next phase (Delayed Intensification), thanks to Doxorubicin. I imagine his hair days are numbered.

Constipation
Vincristine is known for this, and somehow we’ve managed to avoid it. We use senna tea (Smooth Move) every couple days if things feel off, but mostly push hydration (Ultima grape is our favorite) and raw vegetables.

Headaches
Beau’s headaches usually accompany intrathecal chemo via lumbar puncture. Since we only had one LP this phase, it barely registered as a symptom.

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The Hardest Part of Interim Maintenance I

During Interim Maintenance, IV Methotrexate (MTX) is escalated based on the patient’s ability to maintain high enough blood counts.

Every nine days, Beau’s blood was drawn. If his ANC was above 1,000 (don’t quote me—maybe it’s 750), the MTX dose increased by 50 mg. If counts were too low, there was a four-day hold and repeat labs. If still low, the dose was skipped. If somewhere in the middle, the previous dose was repeated.

At the start of this phase, our nurse explained it like this:

• 25% of kids can’t escalate at all
• 50% escalate partway
• 25% escalate through the entire phase

So every nine days, we draw labs and waited. This waiting was the hardest part of the whole month.

Since December, our lives have revolved around numbers—ANC, WBC, hemoglobin, liver enzymes, kidney function. Blood results have become synonymous with how we are doing. We’ve prayed for rising counts. Prayed hemoglobin wouldn’t drop. Prayed Beau’s liver and kidneys would keep chugging through toxicity with reckless abandon.

And they have.

Beau’s body has been kicking ass and taking names.

Which, surprisingly, does not erase the worry. There has been plenty of worry. But woven through it has been this steady, reassuring thread: his labs look good.

Enter Methotrexate escalation.

Those same strong numbers earned him more toxic chemotherapy.

Congratulations.

Beau escalated the entire way through. His ANC stayed high enough for school. His labs looked eerily similar to those of a non-cancer kid. And for that, we are thankful. Period.

(Here I am reminding myself: we are thankful.)

And also—there is grief. Confusion. Sadness. Because a strong immune system means more chemo. And no amount of gratitude fully covers the fact that “good numbers” can mean your kid gets pummeled with more toxicity.

This is cancer.

Hoping for one thing. Getting it. Wondering if it was the right thing to hope for.
Hoping for one thing. Getting it. Wishing you’d hoped for something else.
Trying to sit inside gratitude for receiving what you hoped for—while your mind wanders toward what might have been. Which inevitably leads back to the truest truth.

What you really hoped for was that cancer wouldn’t have happened at all.

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Biggest Surprise of Interim Maintenance: School

Beau went back to school. Consistently. YAHOO.

Once cold and flu season was mostly behind us, Beau was able to return. For most of April and May, he attended half days—for energy reasons, nutrition reasons, sibling logistics reasons, and the basic math of how many pickups one human can manage.

This last full week of school, he attended all day. Every day.

I’m thankful no one told me on January 17th that full days wouldn’t happen until May 16th. I wouldn’t have been able to swallow that.

One day at a time.

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A Naturopathic Oncologist Joins the Care Team

We met with a naturopathic oncologist who is joining Beau’s care team to help integrate additional supports. To prepare, I had to fill out paperwork listing all relevant medical information from the past 12 months. This took hours.

As I pulled it all together—procedures, meds, hospitalizations—I thought: holy crap, we have done so much.Experienced so much. Survived so much. In the day-to-day of cancer, you don’t look back very often. It’s easier not to. Necessary, even. Reflection comes with overwhelm.

But in that moment, I felt proud. Tired. Brave. Accomplished.

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Other Notes- A birthday in clinic

Beau spent his birthday at clinic.

Happy birthday—have some chemo!

And yet, it was one of the sweetest days. Gramps was visiting from Florida and got to see Beau in a much better place than at diagnosis. The nurses and doctors sang a full-volume “Happy Birthday,” gifted him a Lego set, and brought a cake—with gluten and food coloring. I even let him eat it. Imagine his surprise.

It felt like a family birthday party.

In the most unexpected way, the Center for Cancer and Blood Disorders Clinic on Floor 7 became a beautiful place to celebrate the life of this sweet kid.

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