April 2, 2026

David Baldwin

Noah's Dad

So close to the end of round 5 and Noah’s got a bacterial infection. Not going to sugarcoat it; he’s in pretty rough shape at the moment.

We don’t know the exact strain yet, but should sometime today. We do know it’s a gram-positive strain. Regardless of the specific strain, vancomycin and cefepime are the go-tos, and he is already on those.

It’s been tough to keep the fever in check and the amount of vomiting has increased to where it’s mostly dry-heaving. They just did a CT scan to check for a “bleed” (intracranial bleeding). Noah has not vomited this much before and has had a persistent bad headache so best to be sure.

He also got another transfusion of platelets. A consistent fever really eats away at platelets and we need to keep those up.

He’s been getting Zofran for nausea and Tylenol for fever and headache. The Zofran doesn’t seem to be controlling the vomiting so we’re going to supplement with a scopolamine patch again. Next up would likely be Ativan.

Things are moving pretty quick at the moment. I’ll try to keep updates short and more frequent for a bit here. We love you all.

Terms in This Post

Scopolamine

An anti-nausea medication delivered via a small patch placed behind the ear. Noah was switched to this in round 5 after having an allergic reaction to IV Emend. Unlike Emend, which is taken for the first few days of treatment, the patch provides continuous delivery.

Platelets

Blood cells that help with clotting. Normal range is 150-450. Noah receives platelet transfusions when counts drop below 20. Platelets have a short lifespan (9-12 days) and are often the first to drop and last to recover after chemo, but they've recovered more quickly than hemoglobin for Noah. After rounds 2 and 3 his platelets shot up to the top of the normal range.

ALL (Acute Lymphoblastic Leukemia)

The most common type of childhood leukemia. Treatment typically lasts 2-3 years total. It begins with intensive phases, though generally with less time spent inpatient than AML. After the intensive phases, patients enter a prolonged maintenance phase with oral chemotherapy that continues for 2+ years on an outpatient basis.

AML (Acute Myeloid Leukemia)

The type of leukemia Noah has. It requires aggressive, in-patient chemotherapy treatment. AML is less common in children than ALL. Typically 4-6 months of intensive treatment — usually 4-5 cycles of inpatient chemotherapy, each requiring roughly a month in the hospital. Some patients then go to stem cell transplant, which adds more time and recovery.

ANC (Absolute Neutrophil Count)

A measure of neutrophils, the white blood cells that fight infection. Normal range is 1,500-8,000. Below 500 is considered severely neutropenic with high infection risk. After chemo, Noah's ANC drops to zero and we wait for it to recover, which can take weeks. Calculated as: WBC × (% neutrophils + % bands) / 100.

APC (Absolute Phagocyte Count)

A broader measure of immune cells that includes both neutrophils and monocytes. Doctors often want this above 300 before performing bone marrow tests. Calculated as: WBC × (% neutrophils + % bands + % monocytes) / 100.

Blast Cells

Immature blood cells that are normally found in small percentages in bone marrow (around 2%). In leukemia, blast cells stop maturing, replicate uncontrollably, and crowd out healthy blood cells. A high blast cell percentage is a key indicator of leukemia. Noah's was at 27-28% at diagnosis and 38% when tested a few days later.

Bone Marrow Test / Biopsy

A procedure to collect bone marrow samples (both liquid and solid) from the hip area. Used to check the percentage of leukemia cells remaining and for MRD testing. Noah is under anesthesia for this procedure.

Bone Marrow Transplant

A potential treatment option if leukemia relapses. Requires a genetic match — siblings have a 25% chance of being a match. Mixed-race patients (like Noah, who is Asian/Caucasian) have more difficulty finding matches. Micah was confirmed as a full match for Noah.

Central Line

Two tubes surgically inserted into a large vein near the heart. Used for blood draws, IV fluids, transfusions, and chemo delivery. Makes treatment much easier than repeated needle sticks. The lines need to be flushed regularly with saline and heparin to prevent clotting.

Cytarabine (ara-C)

The most common chemo drug throughout all phases, delivered via IV. It mimics a building block of DNA, and when rapidly dividing cells (like leukemia cells) try to copy their DNA, cytarabine gets incorporated and causes the process to fail.

Daunorubicin

A bright red chemo drug and an anthracycline, a class of drugs known to pose heart risk (requires a heart protectant beforehand). Unlike cytarabine, which only works when cells are actively copying their DNA, daunorubicin damages existing DNA directly — so it can hit cells even when they're not dividing.

Emend (Aprepitant)

An anti-nausea medication used to prevent chemo-induced nausea and vomiting. Noah typically received it as a liquid for the first three days of each treatment round. He had an issue with the liquid form as it makes him gag, and an attempt at IV delivery in round 5 caused an allergic reaction. He was switched to a scopolamine patch instead.

Etoposide

A chemo drug used in phase 3. Noah had an allergic reaction to this one initially, which required pre-medication to avoid. It interferes with DNA copying, similar to one of daunorubicin's mechanisms but without the same heart toxicity concerns.

FLT3 Mutation

A genetic mutation found in about 10% of pediatric AML patients that causes faster replication of leukemia cells. Noah tested negative for this mutation.

Gemtuzumab

An antibody that targets cells with a protein on the surface of most leukemia cells (CD33). It binds the protein, gets pulled inside the cell, and releases a toxin — a targeted approach compared to standard chemo. It was only delivered on one day during Phase 1.

Hemoglobin

The oxygen-carrying protein in red blood cells. Normal range is about 11-16. Noah was admitted with a critically low hemoglobin of 4.7 and receives red blood cell transfusions when it drops to 7 or below.

Induction / Intensification

The phases of chemotherapy treatment. Noah's protocol includes 5 phases: Induction 1, Induction 2, Intensification 1, Intensification 2, and Intensification 3. Each phase involves days of chemo followed by weeks of count recovery in the hospital.

LP / Lumbar Puncture / Spinal Tap

A procedure where a needle is inserted into the lower spine to collect spinal fluid and deliver medication. Used to test for leukemia in the CNS (central nervous system) and to deliver chemotherapy directly into the spinal fluid as a preventative measure. Noah receives after each phase of the treatment.

MRD (Measurable Residual Disease) Testing

A sensitive test that can detect cancer cells at very low levels (as few as 1 in 10,000 cells for AML). Used to determine if a patient is in remission. The threshold for remission is fewer than 5 abnormal cells per 10,000.

Mitoxantrone

A chemo drug used in round 4. It is a deep blue color sometimes called "Smurf juice" around here. It works similarly to daunorubicin — damaging DNA directly and interfering with cell division. Also similar to daunorubicin, it requires a heart protectant (dexrazoxane) beforehand.

Monocytes

Another type of white blood cell, typically composing 2-8% of white blood cells. Monocytes are included in the APC calculation along with neutrophils. A rise in monocytes after chemo can sometimes be a precursor to neutrophils starting to recover.

Neutropenia

A condition of low neutrophil concentration in the blood. An ANC below 1,500 is considered neutropenic, and below 500 is severely neutropenic with high infection risk. After chemo, Noah's ANC drops to zero and we wait for it to recover before going home.

Neutrophils

White blood cells that heal injuries and fight infection. They typically make up about 60% of white blood cells and are the primary component of the ANC.

Over and Out

During the first round of treatment, Noah and David got walkie-talkies to "super secret communicate" throughout the hospital. The first post after ended with "love you and over and out" and it stuck.

Platelets

Port

A port (or port-a-cath) is a device implanted entirely under the skin with a small reservoir that is accessed by a needle through the skin. Noah has a central line, not a port. A central line has external tubes, while a port is fully internal. Earlier posts mistakenly used "port" when referring to Noah's central line.

Positive Pressure Room

A specialized hospital room with an anteroom that helps keep germs out. Required when a patient has no immune system (ANC at zero). Anyone entering must go through the anteroom first.

Remission

When MRD testing shows fewer than 5 abnormal cells per 10,000. This does not mean zero cancer cells or that treatment is over — it means the leukemia is "currently" under control. Noah achieved remission after induction 1 with just 1 abnormal cell per 10,000 detected. None were detected after induction 2.

Rylaze

A chemo drug used in round 5, delivered via intramuscular (IM) injection. It is a recombinant form of erwinia asparaginase — an enzyme that breaks down the amino acid asparagine in the blood. Normal cells can make their own asparagine, but leukemia cells cannot and must pull it from the bloodstream. Without that supply, they are effectively starved. Unlike most other chemo drugs Noah has received, which attack DNA, Rylaze targets a metabolic weakness specific to leukemia cells.

April 2, 2026

Terms in This Post

Scopolamine

Platelets

ALL (Acute Lymphoblastic Leukemia)

AML (Acute Myeloid Leukemia)

ANC (Absolute Neutrophil Count)

APC (Absolute Phagocyte Count)

Blast Cells

Bone Marrow Test / Biopsy

Bone Marrow Transplant

Central Line

Cytarabine (ara-C)

Daunorubicin

Emend (Aprepitant)

Etoposide

FLT3 Mutation

Gemtuzumab

Hemoglobin

Induction / Intensification

LP / Lumbar Puncture / Spinal Tap

MRD (Measurable Residual Disease) Testing

Mitoxantrone

Monocytes

Neutropenia

Neutrophils

Over and Out

Platelets

Port

Positive Pressure Room

Remission

Rylaze

Scopolamine

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