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The long maintenance phase: two years at home | CION Cancer Clinics
Maintenance for a child with ALL usually lasts about two years, and most of it happens at home. Your child takes tablets by mouth, visits the clinic for blood tests, and often has short steroid courses and spinal treatment. It is gentler than the earlier phases, but it still matters. This page explains the routine, the fever rule and how families cope with the long stretch. At CION Cancer Clinics, our haematology team supports patients and families through treatment, cost questions and life at home.
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Medically reviewed by Dr. Basudev PokhrelConsultant Haematologist · last reviewed September 2026, next review due September 2027
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On this page
- What does the maintenance phase of ALL actually involve?
- What does a normal month of maintenance look like?
- How do the two years usually unfold?
- What do families often get wrong about maintenance?
- What do the words on the clinic chart mean?
- How can your family get through two years at home?
- Common questions about the maintenance phase
The short answer
What does the maintenance phase of ALL actually involve?
Maintenance is the longest and gentlest part of treatment for acute lymphoblastic leukaemia (ALL) in children. It usually lasts about two years, and most of it happens at home, with tablets taken by mouth and regular visits to the clinic for blood tests.
Why it goes on for so long
By the time maintenance starts, the earlier, harder phases have usually cleared the leukaemia to a level tests cannot easily find. A small number of leukaemia cells can still hide in the body. Low, steady treatment over a long stretch keeps pressure on those cells while they try to grow back. Stopping early raises the chance of the leukaemia returning.
What changes for your child
Hospital stays become rare. Hair usually grows back. Most children return to school and play for much of this time. Energy is often lower than other children's, and there are still days of feeling unwell, especially around steroid courses.
This page describes a typical pattern. It cannot tell you your own child's schedule. That comes only from the treating team.Week to week
What does a normal month of maintenance look like?
Most plans are built from the same four pieces. Your team will give you a written chart showing which ones apply, and when.
Daily tablets at home
Most children take a tablet called mercaptopurine every day, usually at a set time. The team tells you how to give it, including what to do around meals and milk. Keep it in its own box, away from other children.
A weekly tablet
Methotrexate is usually taken once a week by mouth, on the same day each week. It is easy to mix up with the daily tablet, so many families mark the weekly day on a calendar.
Never give it daily by mistake. If you are unsure, call the team before giving it.Clinic visits and blood tests
Your child's blood counts and liver tests are checked regularly. The team uses these results to adjust the tablets up or down. This is expected, and it is not a sign that something has gone wrong.
Pulses and spinal treatment
Many protocols add short courses on a regular cycle.
Often included
- A few days of steroid tablets
- An injection of vincristine into a vein
- Chemotherapy into the spinal fluid by lumbar puncture
Not sure whether this applies to you?
Ask an oncologist
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The one thing that cannot wait
A fever during maintenance can mean a serious infection, even when your child looks well. If your child has a fever, shivers, turns pale and floppy, or has bleeding or bruising you cannot explain, go to the nearest emergency department straight away, or call 108. Say your child is on treatment for leukaemia. Do not wait for the morning, and do not give fever medicine first without speaking to the team.
The long stretch
How do the two years usually unfold?
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The first weeks
Tablets start at home and blood tests are frequent. The team is finding the level of medicine your child's body handles. Changes to the tablets in this period are normal.
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Settling into a routine
Visits space out once counts are steady. Families usually find a rhythm: tablets at the same time, a calendar for the weekly dose and pulses, and a bag packed in case of fever.
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Back to school and play
Most children return to school during maintenance, with a plan for infections such as chickenpox and measles in class. Talk to the team before the first day back.
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The middle months
This is when tiredness with the routine sets in, for the child and the parents. It is also when doses get missed. Ask the team for help before it becomes a habit.
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The last dose and after
Treatment stops on a date the team sets. Follow-up visits continue for years, first often and then less often, with checks for late effects of treatment.
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Commonly believed
What do families often get wrong about maintenance?
"The hard part is over, so the tablets matter less now."
The tablets are the treatment in this phase. Missed doses over months are linked to a higher chance of the leukaemia coming back. If giving them is a struggle, tell the team. They have ways to help.
"We missed a tablet, so we should give two tomorrow."
Do not decide this on your own. Call the team and tell them which tablet was missed and when. They will tell you what to do. Doubling up can push the blood counts too low.
"If the counts drop, the leukaemia must be back."
Low counts in maintenance are usually the effect of the tablets, and the team expects them. That is why the dose is adjusted. A single result is read alongside how your child is and repeat tests, not on its own.
"Herbal tonics will build up his strength safely."
Some herbal and home remedies change how the liver handles chemotherapy, or affect the blood counts. Show the team every tonic, powder and supplement before your child takes it, even ones that seem harmless.
On the blood report
What do the words on the clinic chart mean?
- Neutrophils (ANC)
- The white cells that fight bacterial infection. The team watches this number closely, because a low level makes fever more serious.
- Platelets
- The cells that help blood clot. A low level shows up as easy bruising, tiny red spots on the skin or nosebleeds.
- Haemoglobin
- The part of the blood that carries oxygen. When it is low, your child may be pale, tired or breathless.
- Liver tests (ALT, bilirubin)
- Maintenance tablets can strain the liver. Raised levels often lead the team to adjust the dose for a while.
- TPMT or NUDT15
- Gene tests that show how your child's body breaks down mercaptopurine. They help the team choose a safe starting level.
Reference ranges differ between laboratories, and a single result is always read alongside symptoms and repeat tests.
Living with it
How can your family get through two years at home?
Treat maintenance as a long routine, not a crisis. The families who cope well usually share the work, keep a written chart and call the team early instead of guessing.
Food, hygiene and outings
Freshly cooked food at home is usually fine. Wash hands before meals and after the toilet. Avoid crowded places when counts are low, and keep your child away from anyone with chickenpox or measles. Tell the team at once if there has been contact. Ask before any vaccination, for your child or for brothers and sisters.
Looking after yourselves
Two years is long for parents, and for the other children at home. Take turns with tablets and clinic visits. Tiredness, worry and short tempers are common, and the team would rather hear about them than see you burn out.
What this page cannot tell you
It cannot tell you your child's risk group, exact medicines or end date, or how your child will do. Those depend on the type of ALL, how it responded early on and the protocol. Ask your child's haematologist to explain your own plan, and keep asking until it is clear.
Questions parents ask
Common questions about the maintenance phase
How long does maintenance last for a child with ALL?
Usually about two years, though the exact length depends on the protocol your child's team is following. Some protocols count from the start of maintenance and some from diagnosis. Ask the team for the planned end date and write it down, so the whole family knows what they are working towards.
Can my child go back to school during maintenance?
Most children do. School helps with routine, friendships and mood. Before the first day back, ask the team what to tell the teachers, especially about fever and about chickenpox or measles in the class. The school should call you at once if either happens, so the team can act quickly.
My child vomited soon after the tablet. What should I do?
Do not give another tablet on your own. Note the time the tablet was given and when the vomiting happened, then call the team. They will tell you whether to repeat it or wait. If vomiting keeps happening, the team may give medicine for sickness or change how the tablets are given.
Why does the dose keep changing?
Because each child handles the tablets differently, and this can change over time. The team reads the blood counts and liver tests at each visit and adjusts the dose to keep your child in a safe working range. Frequent changes are a sign the plan is being watched closely, not a sign of failure.
Can we travel to our village for a family function?
Often yes, with planning. Tell the team the dates and place well ahead. Carry enough tablets and the written chart. Find out where the nearest emergency department is, because a fever cannot wait for the journey back. Avoid crowded gatherings if the counts are low.
Can brothers and sisters have their vaccines?
Most routine vaccines for siblings are encouraged, because they help protect your child. A few live vaccines need care in a home with a child on treatment. Tell the siblings' doctor about the leukaemia treatment, and ask your child's team before any vaccine is given to anyone in the house.
Is it normal for my child to be moody on steroid days?
Yes. Steroid courses often bring hunger, poor sleep, tearfulness and anger, and they usually settle once the course ends. If the changes are severe, frightening or do not settle, tell the team, because there are ways to help.
What happens after the last tablet?
Many families feel scared rather than relieved, because treatment felt like protection. Follow-up visits carry on for years with blood tests and checks on growth, learning, the heart and other late effects. The team will explain which signs mean you should come back early, and whom to call.
Your Haematologist
Meet CION's haematologist. One specialist for your blood report and your plan.
Dr. Basudev Pokhrel reviews blood counts, transfusion needs and blood disorders, and works with the CION tumour board on blood cancers.
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Sources
- Cancer.Net — Leukemia - Acute Lymphoblastic - ALL - Childhood: Types of Treatment
- National Cancer Institute — Childhood Acute Lymphoblastic Leukemia Treatment (PDQ) - Patient Version
- American Cancer Society — Leukemia in Children
- NHS — Acute lymphoblastic leukaemia
This page is general information, not a prescription. Do not change or stop any treatment based on what you read here. If anything is worrying you, contact your own treating team — or call our helpline and we will help you reach the right specialist.
Keep reading
Related pages
Induction, Consolidation and Maintenance in Childhood ALLHow maintenance fits after the earlier, harder phasesSteroids and Behaviour Changes in ChildrenCoping with mood and hunger on steroid daysSchool During Childhood Leukaemia TreatmentPlanning the return to class safelyBlood counts during chemotherapyWhat the numbers on the clinic chart meanPaediatric Blood CancersEvery guide for families facing a child's blood cancer
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Finding the maintenance routine hard?
Tell us where your child is in treatment and what is worrying you. CION's haematology team will help you understand the plan and what to ask next.