15.2 Sleep Disturbance and Fatigue

TCO IV.B.2 and IV.B.3 test sleep disturbance and fatigue as separate but overlapping general effects. A child who cannot sleep on dexamethasone and a child who cannot walk to the school bus after induction are not the same problem, and neither is automatically depression or hypothyroidism. The nurse names the driver, protects sleep as a nursing intervention, grades activity, and does not miss shock or sepsis dressed up as "just tired."

A 6-year-old on ALL induction who has been talking at 02:00 for two nights, a 3-year-old whose hemoglobin has fallen and who now refuses the hallway walk they did yesterday, and a febrile neutropenic toddler who "only wants to sleep" after playing an hour ago are three different clocks.

Why pediatric oncology sleep fails

Dexamethasone (and, less often, high-dose prednisone) causes insomnia, night waking, hunger, and mood lability—classic during acute lymphoblastic leukemia (ALL) induction and pulses. Teach families the steroid window: the child may be up at 02:00 talking, eating, and raging. This is a drug effect, not failed parenting. Protect the environment, do not add caffeinated soda as a coping tool, and do not stop the steroid because of insomnia without the team—adrenal and protocol rules live in the endocrine and leukemia chapters. When the protocol allows, give the steroid in the morning rather than at bedtime so the peak stimulation is not at midnight.

The hospital itself injures sleep: hallway noise, pulse-ox alarms, night vital signs on a stable child, 04:00 phlebotomy, and roommate distress. Anxiety, nightmares, and fear of the next lumbar puncture keep adolescents awake after the lights are out. Central nervous system (CNS) disease—leukemic infiltration, brain-tumor residual, cranial-radiation somnolence (signposted to the neurologic-effects chapter), and steroid psychosis—changes sleep architecture. Anemia produces daytime napping that then delays night sleep. Pain that was never treated is not a "sleep hygiene" problem; treat the pain first (previous section).

Sleep hygiene, cluster care, melatonin

Nursing interventions are operational, not slogans:

• Sleep hygiene: a consistent bedtime when the protocol allows, dim lights, screens off, a familiar blanket, and a parent present if that is the child's sleep cue. Daytime naps for toddlers are physiologic; all-day bed rest for a bored school-age child with a stable hemoglobin who is simply deconditioned is not.
• Cluster care: group vitals, medications, and assessments so a stable night-shift child is not woken at 23:00, 01:00, and 03:00 for identical "routine" sets. Negotiate which parameters truly need a 02:00 stick. A well-looking child on maintenance whose oxygen saturation has been 99% all evening does not need an hourly full set to prove the unit is busy.
• Melatonin is used per order—not as a nurse-improvised over-the-counter habit from a parent's purse, and not as a substitute for treating pain, delirium, or steroid insomnia. Report what the family is already giving. Other hypnotics, if used, are prescriber decisions with attention to paradoxical agitation in young children.

A 6-year-old on dexamethasone who has not slept two nights needs a plan: environment, morning steroid timing if allowed, Child Life, and a prescribed sleep aid if the team orders one—not a lecture that everyone is tired in the hospital.

Cancer-related fatigue is a diagnosis of workup, not a shrug

Cancer-related fatigue (CRF) is persistent, disproportionate tiredness related to cancer or its treatment that is not relieved by one good night. It is real. It is also a differential:

• Anemia: falling hemoglobin, tachycardia, pallor, flow murmur. Transfuse when anemia is symptomatic per the team and the center's threshold—not because a number on a poster is an ONCC fact, and not because the child "looks a little tired" with a stable hemoglobin and is playing. Symptomatic anemia means dyspnea at rest, marked tachycardia, poor feeding in an infant, or inability to walk a hallway they walked yesterday. That is a transfusion conversation. Asymptomatic, activity-tolerant anemia is watched.
• Hypothyroidism: cranial or neck radiation, radioiodine, checkpoint-inhibitor endocrinopathy, and iron overload in transfusion-dependent disease. Fatigue plus cold intolerance, weight gain, or bradycardia needs a thyroid-stimulating hormone, not only a pep talk. Signpost the endocrine chapter; do not skip the lab.
• Depression: persistent anhedonia, hopelessness, sleep that is either hypersomnia or insomnia with early waking, and functional withdrawal. Fatigue from depression does not correct with a red-cell unit. Mental-health effects are the next section; overlap is expected.
• CRF remains after those drivers are addressed: inflammatory cytokines, deconditioning, sleep debt, and the treatment calendar. Name it so families stop hearing "try harder."

Energy conservation and graded activity beat both extremes—forced competitive gym and total bed rest. Teach the family a bank of energy: school in the morning when the child is strongest, a rest after lunch, physical therapy rather than a week in bed after each cycle. A 10-year-old after high-dose methotrexate who sleeps until noon, attempts a full sports practice, then collapses is on the wrong schedule, not "noncompliant."

School schedules should flex: shortened days, a 504 plan rest pass, and no standardized-test marathon the week after a heavy cycle. Coordinate with the school-reentry teaching that belongs in psychosocial chapters; here the medical fact is that fatigue is a physiologic limit, not laziness. Teachers who call the child unmotivated need a one-line medical letter, not a character debate.

Fatigue versus impending shock or sepsis

The dangerous item is the child labeled "fatigued" who is actually poorly perfused. New lethargy, delayed capillary refill, tachycardia out of proportion to fever or known anemia, cool extremities, oliguria, or a neutropenic child who "just wants to sleep" after previously playing is sepsis or shock until the team says otherwise. Do not coach energy conservation while skipping a blood pressure, a lactate as ordered, and the sepsis pathway (later emergency chapter). CRF is days to weeks of disproportionate tiredness in a hemodynamically stable child. A two-hour collapse in a febrile neutropenic toddler is not CRF.

Radiation somnolence three to eight weeks after cranial radiation is another sleepiness that is not CRF and not automatically rising intracranial pressure—but morning vomiting plus a new pupil change is still an emergency-chapter problem. Send somnolence to the neurologic-effects timing, and send shock to the sepsis chapter. This section's job is to keep those mislabels from happening.

The CPHON product is a night that was actually protected, a steroid family who expected the 02:00 wake-up, a transfusion given for symptoms rather than habit, a school day that matches the energy bank, and a nurse who never calls evolving shock "cancer fatigue."