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Childhood Leukaemia Treatment — Parent Guide
Maintenance therapy in childhood leukemia — what it involves and what to expect
Medically reviewed by the CION Paediatric Oncology Team · Last reviewed June 2026
Your child has made it through induction and consolidation — that is a real milestone. Now comes the longest phase: maintenance. This page explains what maintenance chemo for childhood leukemia actually looks like day to day, so you can plan, prepare, and know when to call the team.
- Leukemia maintenance phase explained — why it lasts 1.5 to 2 years and what the medicines do
- Oral chemo at home — how the daily medicine routine works and what to do if a dose is missed
- 45-minute consultations — every blood count review fully explained, every question welcomed
- Tumour board review — your child's case discussed by the full team, not one doctor alone
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Understanding maintenance treatment
What is the maintenance phase — and why does it last so long?
The maintenance phase is the final and longest stage of childhood leukemia treatment. For most children with ALL, it runs for between 18 months and 2 years. This surprises many parents who expected treatment to end once their child was in remission.
Remission means that leukaemia cells are no longer detectable in the blood or bone marrow using standard tests. But cells can survive in very small numbers — too few to detect, yet enough to cause a relapse if treatment stopped too soon. The maintenance phase exists specifically to mop up these last hiding cells and prevent the leukaemia from coming back.
What makes the leukemia maintenance phase different from what came before is its intensity — or rather, its gentleness. Induction and consolidation use high-dose medicines given by drip in hospital. Maintenance uses much lower doses, mostly given as tablets or liquid by mouth at home. This allows your child to live at home, sleep in their own bed, and in many cases return to school and friends.
The duration of maintenance varies by protocol and by gender. Girls typically complete maintenance in around 18 months from the start of that phase. Boys usually stay on maintenance for approximately 24 months — the additional time is because the disease can shelter in testicular tissue at very low levels, and longer treatment reduces the chance of it returning from there. Your oncology team will confirm the exact timeline for your child at the start of maintenance.
It is normal to feel worn out at this point in the journey. Two or more years of treatment is a long time — for your child and for you. We walk this journey with you. Every visit, every blood count, every question — the CION team is alongside you until the day your child rings that completion bell.
Oral chemo maintenance child — clinic routine
What happens at a maintenance clinic visit — step by step
During the leukemia maintenance phase your child will attend clinic regularly — typically every 4 to 8 weeks, though this varies. Knowing what to expect at each visit reduces anxiety and helps you prepare the right questions. Here is what each visit usually involves.
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Before you arrive
Blood sample taken — usually at home or a nearby collection point
Many teams ask you to have a blood test done a day or two before the clinic visit. This gives the lab time to process the results so the oncologist has the counts ready when you walk in. Some families use a home blood draw service; others visit a local collection centre. Your team will tell you which route to use and where to go. Bring the lab slip and any previous results with you.
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At clinic — counts review
Blood count review — deciding whether to continue, hold, or adjust doses
The oncologist reviews the full blood count. The number they pay most attention to during oral chemo maintenance is the neutrophil count — the white cells that fight bacteria. If the count is too low, the dose of oral medicine may be reduced for the next cycle or the cycle may be held for a week. If counts are in a safe range, the team confirms the dose continues unchanged. Dose adjustments are routine and expected; they are not a sign that something has gone wrong. The goal is to keep the medicine as effective as possible while keeping infection risk manageable.
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At clinic — liver and kidney checks
Organ function tests — protecting the liver throughout maintenance
The oral medicines used in maintenance chemo can affect liver enzyme levels over time. A blood panel checking liver function is included at each visit, and periodic kidney function checks are also done. If liver enzymes rise above a safe threshold, the team will hold or reduce the oral medicine dose temporarily to allow recovery. This is a well-understood side effect and is managed routinely. Most children's liver function stays within an acceptable range throughout maintenance, but the monitoring is there to catch any elevation early.
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At clinic — steroid pulse weeks
Steroid pulse review — managing the short intensification weeks
Most childhood ALL maintenance protocols include short courses of a steroid medicine given by mouth for several days every 4 to 8 weeks. These “steroid pulses” intensify the effect of maintenance briefly. During steroid weeks, your child may experience mood swings, increased hunger, disrupted sleep, and a rounder face. These effects are temporary and resolve when the steroid course ends. The clinic visit that coincides with a steroid pulse week gives the team a chance to assess how your child tolerated the last course and adjust the next one if needed.
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At clinic — your questions
The 45-minute consultation — every question answered before you leave
At CION, every consultation is a minimum of 45 minutes. This is not a rushed count check and goodbye. Your child's oncologist will ask about their appetite, energy levels, sleep, and mood. You will have time to bring up anything that has worried you since the last visit — a bruise, a new tiredness, a question about a missed dose. Before you leave, the team will confirm the next visit date, the current medicine doses and schedule in writing, and what temperature threshold should trigger an emergency call. You should never leave a CION clinic visit unsure of what to do next.
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Side effects & when to call
Side effects during the maintenance phase — what is expected and what needs a call
Maintenance medicines are gentler than induction chemotherapy, but they are not without side effects. Understanding what is normal during oral chemo maintenance helps you stay calm about expected effects — and recognise the ones that need a same-day call to the team.
Fatigue
The most common complaint during maintenance. Many children sleep more than usual, particularly in the day or two after taking their weekly medicine dose. Energy levels often improve in the days after, then dip again with the next dose cycle. Build rest time into the week schedule. Fatigue during maintenance is expected; it does not mean the disease is getting worse.
Fever — act immediately
A temperature of 38°C or above in a child on maintenance chemo is a medical emergency until proven otherwise. Call your oncology team immediately and go to the paediatric oncology unit. Do not wait to see if it settles. Do not give paracetamol and watch. Low white cell counts can turn an ordinary infection into a life-threatening one very quickly. Your team will give you a written fever protocol and a 24-hour emergency number.
Nausea and mouth sores
Mild nausea, reduced appetite, and occasional mouth sores are common during maintenance oral chemo. These are usually manageable at home. Offer small frequent meals, soft foods during mouth sore flares, and plenty of fluids. The team can prescribe an anti-nausea medicine to give before the oral dose if nausea is disrupting meals or sleep. Let the team know at the next visit — they will adjust the anti-nausea support if needed.
Steroid pulse — mood and appetite changes
The short steroid courses built into most maintenance protocols cause temporary but pronounced side effects: mood swings, tearfulness or aggression, sharply increased appetite, bloating, and difficulty sleeping. These are expected and resolve when the steroid course ends — typically within a few days. Warn teachers and family in advance so they understand the behaviour change is medicine-related. The team can advise on managing sleep and mood during steroid weeks.
Raised liver enzymes
Some oral maintenance medicines can raise liver enzyme levels in the blood over time. This is picked up at regular blood tests and is one of the main reasons clinic visits continue throughout the maintenance phase. If enzymes rise above a safe level, the team will temporarily reduce or pause the oral medicine dose to let the liver recover. This is a well-managed, expected side effect — not a sign of serious liver disease. You do not need to restrict your child's diet unless the team specifically asks you to.
Infection vulnerability
Even during the gentler maintenance phase, your child's immune system is suppressed. Chickenpox is a particular concern — if your child has not had it and has not been vaccinated, tell the team now. If your child is exposed to someone with chickenpox or shingles, call the team the same day — there is a protective medicine that can be given within 72 hours of exposure. Keep hand-washing habits strong at home. Avoid crowded indoor spaces on low-count weeks.
Fever emergency rule — save this number now
If your child's temperature reaches 38°C or above at any time during maintenance treatment, call the oncology team immediately on 1800 202 8726 and go to the paediatric oncology unit. Do not wait until morning. Do not give paracetamol and monitor. Febrile neutropaenia is a medical emergency. Your team will give you a 24-hour contact number at the first maintenance visit — keep it in your phone.
Daily life during oral chemo maintenance
School, play, and routine — living well during the maintenance phase
The maintenance phase is designed to let your child live at home and, on most days, live as normally as possible. That is not a small thing — it matters enormously for your child's wellbeing, confidence, and recovery.
School: Most children on oral chemo maintenance can attend school, and the oncology team generally encourages it. Routine, friendships, and learning are protective for children going through a long treatment course. The key is to watch blood counts. On weeks when neutrophil counts are low, the team may advise staying home or avoiding crowded settings. Inform the school about the situation — not to draw attention to your child, but so teachers can let you know about illness outbreaks before your child is exposed. A letter from the oncologist can help if the school needs documentation for absences.
Physical activity: Light activity and play are beneficial and should be encouraged on days when energy allows. Swimming in well-maintained pools is generally acceptable unless there is an active infection; check with your team. High-contact sports or activities with a significant risk of bleeding or injury may need to be avoided on low-platelet weeks. Ask the oncologist at each visit whether the current counts allow your child's favourite physical activities.
Diet: There is no special anti-cancer diet required during maintenance. Focus on regular balanced meals — your child's appetite may fluctuate with the medicine cycle and with steroid pulses, so keep a variety of foods available rather than forcing meals. Avoid raw or undercooked meat, unpasteurised dairy, and unwashed fruit during periods of very low white cell counts. Your oncology team or a CION nutritionist can give you specific guidance for your child's situation.
The oral medicine routine: Most maintenance protocols involve taking tablets or liquid at home on a daily and weekly schedule. The team will give you a written medicine card showing which medicine, which dose, which days of the week, and whether it should be given with or without food. Keep the medicines stored exactly as the pharmacist advises — some require refrigeration. If your child vomits within 30 minutes of taking a dose, call the team for guidance on whether to give the dose again. Never double-dose to compensate for a missed one without asking first.
Emotional wellbeing: A two-year maintenance course is long. Children may feel isolated from peers, frustrated by restrictions, or anxious about clinic visits. Some children develop a genuine fear of needles after months of blood tests. The CION team includes psycho-oncology support — a counsellor who works specifically with children and families in cancer treatment. You do not need a referral; ask your oncologist at any visit and we will arrange it.
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Common questions
Your questions about maintenance therapy in childhood leukaemia — answered
How long does the maintenance phase of leukemia treatment last for children?
The maintenance phase of childhood leukaemia treatment — particularly for ALL — typically lasts between 18 months and 2 years, making it by far the longest of the three treatment phases. Boys are usually on maintenance longer than girls because the disease can hide in the testes at very low levels, requiring extended treatment to clear it. The exact duration depends on your child's risk group and their protocol. Girls typically complete maintenance after around 18 months; boys often continue for approximately 24 months. Your oncology team will confirm your child's specific timeline at the start of the maintenance phase.
What medicines are used during the leukemia maintenance phase?
Maintenance medicines are much less intensive than those used in induction or consolidation. Most are given by mouth at home, which is why this phase allows children to resume a more normal routine. The oral medicines are usually taken on a daily or weekly schedule — the specific days and doses are worked out by your oncology team based on your child's blood counts. Some children also receive a short pulse of a steroid medicine at regular intervals throughout maintenance as part of their protocol. Your team will give you a written schedule, explain exactly when and how to give each medicine, and tell you what to do if a dose is missed or vomited.
Can my child go to school during maintenance chemo?
Many children do attend school during the leukemia maintenance phase, and the oncology team generally encourages this. School provides routine, social connection, and a sense of normality — all of which help children cope with a long treatment course. However, going to school depends on your child's blood counts on any given week. When white cell counts are particularly low, the team may advise keeping your child away from crowded environments. It is helpful to inform the school nurse and class teacher so they can alert you to infectious illness outbreaks — particularly chickenpox, which is more serious for immunosuppressed children. Your team will give you a clear guide on when to keep your child home.
What blood count level is safe enough for my child to mix with other children?
Your child's oncology team will give you specific thresholds to watch, and these vary by protocol and individual. In general, the team will check your child's neutrophil count — the white cells that fight bacterial infection — at each clinic visit. When this count falls below a certain level (neutropaenia), extra precautions are needed. The team will print out or message you the latest counts after every visit and tell you exactly what the numbers mean for that week. Do not rely on general guidance from the internet for this; the thresholds your team give you are specific to your child's situation and should always take precedence.
What side effects are common during the maintenance phase?
Maintenance medicines are gentler than those in induction and consolidation, but side effects are still present. Fatigue is the most common complaint; many children sleep more than usual, particularly in the days after taking their weekly medicine. Nausea, mouth sores, and tummy discomfort can occur. Some children experience mild hair thinning rather than full hair loss. The steroid pulses — short courses given at regular intervals — may cause mood swings, increased appetite, and disrupted sleep for the days they are taken. Liver enzyme levels are checked regularly during maintenance because some medicines affect the liver. If any side effect seems severe or unusual, call your oncology team — do not wait for the next scheduled visit.
What happens if my child gets a fever or infection during maintenance treatment?
A fever in a child on chemotherapy is a medical emergency until proven otherwise. If your child develops a temperature of 38°C or above, you must contact your oncology team immediately — day or night — and go to the paediatric oncology unit or emergency department without waiting. Do not give paracetamol first and then wait to see if the fever settles. Infections that a healthy child would recover from easily can become life-threatening when white cell counts are low. Your team will provide you with a written fever protocol and a 24-hour emergency contact number. Keep this number in your phone and on your fridge.
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