When your child has a brain tumor

Written for a parent. What is different when the person with the brain tumor is a child. Why the types are not the same. Why your child may need medicine to sleep for scans and radiation. What follow-up covers for years afterwards, and how school support works. And how to talk to your child and their brothers and sisters.

The short version

This page is for a parent. The rest of this site is written to the person with the tumor. Here, that person is your child, and you are the one reading.

Brain tumors in children are not the same as brain tumors in adults. The types are different. The treatment is planned around a brain that is still growing. And a lot of what you will deal with, like scans that need medicine to sleep, school, and check-ups that run for years, does not come up for adults at all.

This is not one tumor. It is a way of grouping many of them. Your child's own tumor has a name, and the page for that name has the detail.

What "pediatric brain tumor" means

It is not a diagnosis. It is a group, and the thing the tumors in it share is the age of the person who has one.

Brain and spinal cord tumors are the second most common cancer in children, after leukemia. There are many types, and they are treated very differently, so the name on your child's report matters more than the group does.

The tumor pages list the types this site covers. If you do not have a name yet, what happens between the scan and the name is the page for the days in between.

Why children are not small adults

The common types are different. Medulloblastoma is far more common in children, and so is an ependymoma at the back of the brain. The ependymomas that grow in the spine are more often found in young adults. Glioblastoma is more common in adults. Meningioma is much less common in children than in adults. ATRT is an embryonal tumor, a group this page explains further down, and that group is more common in young children than in older ones. A germ cell tumor in the brain runs the other way: it is found most often around the early teenage years. Tumors that travel to the brain from a cancer elsewhere in the body are rare in children.

The same name can behave differently in a child, and be treated differently.

A report may say "pediatric-type" or "adult-type". Those words describe the tumor's biology, not your child's age. Glioma explains what that means and why it is not a mistake on the report.

So a study done in adults may not apply to your child. Check who was in a study before you carry the result across. That is worth doing even when the tumor name matches.

Where it grows, and why that causes symptoms

Two notes before the next part, because it was written for an adult patient and you are a parent. It says "you" and "your tumor", and here the tumor is your child's. Read those words as "your child". It also opens by saying that most people are told what they have before anyone explains what it is doing. That is usually true for you too, and the person it is happening to is somebody you are looking after.

Most people are told what they have long before anyone explains what it is doing. These are the ways a tumor in the brain causes symptoms. They overlap, and most people have more than one going on at once. Which of them apply to you depends on what your tumor is and where it sits.

It takes up room. The skull is a closed box. It cannot stretch. So anything new inside it has to push on something. The tumor and any swelling around it together take up space and press on nearby parts of the brain.

It can make the brain around it swell. This one surprises people, and it is worth understanding. Fluid builds up in the brain tissue near the tumor. That swelling plays a major part in deciding what symptoms you get. Some of what you are feeling may not be the tumor itself. It may be the swelling around it. That is why medicines that bring swelling down can change how somebody feels, without the tumor being any different than it was.

Pressure can build up inside the head. When the pressure inside the skull rises, there is a pattern doctors watch for: headaches that are worse in the morning, feeling sick to your stomach and throwing up, odd eye movements, seizures, and being confused or very drowsy. Not everybody with raised pressure has all of it, and some people have almost none of it. If this pattern is new for you, it is worth a phone call rather than a wait. If you have a shunt, it means getting help right away.

It can set off seizures. A tumor and the irritated brain around it can upset the normal electrical activity of that part of the brain. For some people a seizure is the first sign that anything is wrong.

It can block the flow of fluid. The brain makes a fluid that circulates around it and drains away. A tumor sitting in the wrong place can block that flow, so the fluid backs up and the pressure goes up. This is more likely with tumors near the narrow channels the fluid passes through. It can be treated, and the usual treatment is a shunt. That is a thin tube that carries the fluid to another part of the body, where it is absorbed. It is the word your team will use. Shunts and hydrocephalus covers what having one is like, and the signs it has stopped working.

Why your symptoms are the ones you have

The short rule: the symptom tells you where, the scan tells you what. A tumor disturbs whatever job the brain does in that spot, so where it sits decides what you notice.

There is one exception, and it is the fluid. When the flow is blocked, what you notice is the pressure rather than the spot: headaches worse in the morning, throwing up, double vision, and feeling unsteady. Those signs are much the same wherever the blockage sits, so they tell you the pressure is up, not where the tumor is. If that is your pattern, the part above called It can block the flow of fluid is the one about you, and it says what can be done. If the pattern is new, the phone call above applies.

• Front of the brain. Personality, behavior, planning, motivation, and on one side, producing speech.
• Side of the brain, near the temple. Seizures, memory, and understanding what people say.
• Upper back part of the brain. Sensation, knowing where your body is in space, reading, writing and arithmetic.
• Back of the brain. Vision, and losing part of your field of view.
• Cerebellum, low at the back. Balance, coordination and walking.
• Brainstem. Double vision, facial weakness, and trouble swallowing.
• Deep in the middle, near the spaces the fluid runs through. A tumor here can block the flow, so what you notice is often the pressure rising rather than anything that points to the spot.
• The floor of the skull, below and behind the ear. Hearing, balance, and the nerves to the face. So hearing loss or ringing in one ear, dizziness, and numbness or weakness down one side of the face. Your team may call the whole floor of the skull the skull base. This spot is one part of it.
• Behind the eyes, at the base of the brain. Vision, and the hormones that set energy, weight, thirst and periods. In a child, growth and puberty too. Side vision is what usually goes first, so things start disappearing at the edge. Your team may call this the pituitary or the sellar region.

If something on this list matches what you have noticed, it is worth writing down and taking to your next appointment. Your team can tell you whether it fits where your tumor actually is.

This list is about what the place explains. The other half of the question is what the place changes: whether an operation is offered, how much of it can come out, and when the place makes something urgent on its own. Where your tumor is, and what that changes is that half.

What symptoms look like in a child

What a child notices depends on where the tumor sits, its size, how fast it grows, and how old they are. Many childhood brain tumors grow slowly. The symptoms can be mild, can come and go, and may not follow a pattern. Early on they often look like ordinary childhood illnesses, which is why they are missed.

In an older child, the things to notice are a headache that keeps coming back, throwing up, trouble with balance or walking, changes in vision, seizures, being much more tired, doing worse at school, or not seeming like themselves.

Some of the signs below carry a different rule if the tumor started in your child's spinal cord, or has spread there. It comes just after the lists.

The two lists that follow are written to the person who has the tumor. Read every "you" in them as your child. After them, this section goes back to speaking to you.

When to call for help right now

Some things should not wait for the next appointment.

Call an ambulance for any of these. Call 911, or your local emergency number:

• A first ever seizure.
• A seizure that lasts more than five minutes.
• One seizure right after another, with no waking up in between.
• Someone who cannot be woken.
• Trouble breathing, or someone who seems to be choking.
• Suddenly not being able to speak, move one side, or see.

A seizure like the ones you usually have, that stops on its own, is not an ambulance call. What to do during a seizure draws the line.

Call your team the same day for any of these:

• A headache much worse than usual, or one that wakes you from sleep.
• Throwing up again and again.
• New weakness in the face, an arm or a leg.
• New trouble speaking, or understanding what people say.
• New confusion.
• Sleeping much more than being awake.
• A sudden change in your vision.

If you are having chemotherapy, a fever is its own rule. It means calling your team right away, at any hour, not waiting for the morning. An infection during chemotherapy can get dangerous fast, and it is treatable when it is caught early. The fever rule explains why, and what number your team will give you.

In the weeks after brain surgery, a fever is its own rule too, especially with a stiff neck or a bad headache. What comes after a craniotomy has the rest of that list.

If you have a shunt, the signs it has stopped working are their own rule. For you, everything on the same-day list above is a right-away call instead, and so are a few other signs. Get help right away, at any hour: call your team, or go to the emergency department. Signs a shunt is not working has the full list.

If you are not sure whether to call, call. Nobody on that team minds a phone call that turns out to be nothing.

Same day means today, not the next clinic appointment. Ask your team now for the after-hours number, and put it somewhere you will find it at two in the morning rather than somewhere sensible.

What to do during a seizure has the step-by-step, and getting help now is the short version to keep on a phone.

If the tumor is in the spinal cord, or has spread to the spine, new signs from the cord are their own rule. For you, an arm or a leg that is newly weak, or weaker than it was, is a right-away call, not a same-day one.

So are new trouble walking, new numbness or tingling, new or worse pain in the back or neck, and new trouble controlling the bladder or bowel. When cancer presses on the spinal cord, Cancer Research UK calls it an emergency that needs treating quickly. Call your team right away, at any hour, or go to the emergency department.

That last rule only applies if the tumor is in your child's spinal cord, or has reached the spine. Some childhood tumors can reach it and some cannot. If you are not sure whether it applies to your child, ask the team, and read the page for your child's own tumor.

In a baby or a toddler, the signs are different, and here is why. A baby's skull is not fixed shut yet. It can stretch as the brain is pushed, so the pressure can build for longer before anything shows. When something does show, it is often vague. Watch for a head that is growing too fast, a soft spot on top that bulges, being sleepy or hard to settle, feeding badly, not gaining weight, or losing a skill your child already had. Any of those is a same-day call, or a right-away call if your child has a shunt.

A young child who cannot talk yet does not say "my head hurts". A worsening headache may show up only as a child who is anxious, irritated or whiny. That is a same-day call, or a right-away call if your child has a shunt. If your child cannot be woken, that is an ambulance call.

How doctors find out

The tests are the same ones adults have. An MRI scan is the main one, and a piece of the tumor is usually what names it.

What is different is holding still. A scan only works if your child stays still, and small children cannot. So many children are given medicine for it.

• Sedation makes a child relaxed and sleepy.
• General anesthesia puts a child fully to sleep, like a deep sleep.
• Many children need neither. Deep breathing, music or a movie is often enough, and a child life specialist can practice it with your child first.

You can usually stay with your child until they are asleep. Ask.

There is a reason teams use as little of this as they safely can. Too much general anesthesia could affect how a young brain develops, and that concern is strongest under about age 3. It is a reason to ask what your center does, not a reason to refuse a scan your child needs.

What the words on the report mean

The rules for naming brain tumors changed in 2021. If your paperwork was written before that, some of its words are no longer used.

This matters more than it sounds. People read an old report next to a new one, see two different names, and think somebody made a mistake. Usually nobody did. The tumor did not change. The way doctors write it down changed.

Three changes affect almost every report.

• Roman numeral grades, such as grade II or grade IV on an older report. These are now written with ordinary numbers instead: grade 2, grade 4. Nothing about the grade itself changed. Only the way of writing it did.
• Gene results are now part of the name. Older reports named a tumor mostly by how the cells looked. A name written now usually has a gene result built into it. That is why a newer report can look longer and more technical than an older one about the same tumor. You may also see NOSNOS: Short for "not otherwise specified". It means the gene tests needed to name the tumor fully were not done or could not be done. Ask your team whether they can be. See the glossary or NECNEC: Short for "not elsewhere classified". The tests were done, but the results do not match any named tumor type. Ask your team what it means for your plan. See the glossary written next to your diagnosis. These say something about the testing, not about how serious the tumor is. NOS means the tests needed to be more exact were not available. NEC means testing was done, but the results did not fit any defined group neatly.

Seeing an older name on your own report does not mean it was wrong. It means it was written under the old rules. If you are holding an old report and a new one and they do not match, that is a good thing to take to your team and ask about.

One older word turns up a lot in children's tumors. Some tumors are called embryonal tumors, which means they grow from very early forms of nerve cells. These used to be called primitive neuroectodermal tumors, or PNET. Nobody uses that name for a diagnosis now. You may still meet it in an older letter, and it is still used in some research papers, so seeing it does not mean anybody has made a mistake.

Two tumors with the same name can still be different, because their gene results differ. That is why a report can take weeks and why it looks technical.

Your pathology report walks through the document, and what the grade means covers the number.

Brain tumor names are genuinely confusing. Asking your team to say the full name slowly, and writing it down, is a reasonable thing to do.

How treatment is different for a child

The library pages carry what each treatment is: surgery, radiation, proton therapy and chemotherapy. What follows is only what changes because the patient is a child.

Radiation is used carefully in the very young, and sometimes not at all. Teams try to avoid it in very young children and to limit it in others, because of what it does to a developing brain. For children aged about 3 and under, chemotherapy is often given first, so the brain has more time to grow. Where exactly that line sits differs between teams and is changing, so ask your team where they draw it and why.

Radiation may mean daily anesthesia, for weeks. A course can run every weekday for several weeks, and a child who cannot lie still needs medicine to sleep for each session. The radiation itself takes only a few minutes. The visit takes much longer. Younger children usually need this, older children often do not, and some older children still do. Practice varies a lot between centers, so there is no standard to promise you.

Complications from anesthesia in this setting are uncommon.

You can ask for things that reduce how much is needed. Centers report letting a parent into the treatment area, letting a child use a tablet, and having a child life specialist there. Any of those is a fair thing to ask for by name.

Proton therapy comes up more often for children, because sparing healthy tissue matters more when tissue is still developing. It is worth an honest note: it is clearer that this helps for tumors with distinct edges than for tumors that grow into normal brain. Ask your team what it would change for your child's tumor.

Chemotherapy is given on a cycle, which is days of treatment plus rest days. The rest is there on purpose, to let the body recover.

What is treatment actually like, and what is normal afterwards?

After surgery low at the back of the head

Many childhood brain tumors sit low at the back of the brain, so this is a common operation in children. If your child's was somewhere else, this section does not apply.

A day or two after surgery low at the back of the brain, some children stop talking. It can also change swallowing, walking, mood and behavior. It always starts within the first week.

Suddenly not being able to speak is on the ambulance list above, and that rule still stands. What this section describes usually starts in the hospital, in the days right after the operation, where the team is watching for it.

It is frightening to see. Doctors know it as a complication of the operation itself. Most children slowly get better. Speech usually comes back over days or weeks, and for some it takes months. Most children walk on their own again. Some trouble with speech, movement or mood can last longer, even years. Speech therapy can help. If the swallowing, walking, mood or behavior changes start or get worse after you are home, call your team the same day, or right away if there is a shunt.

Giving chemotherapy at home

If your child takes chemotherapy at home, ask to be shown how to handle it before you leave.

Chemotherapy can be taken in through the skin or breathed in. Family members can be exposed if it reaches food or the surfaces you use every day. Your team will tell you what to do about gloves, spills and washing up, and what to do with anything left over.

This is worth getting right rather than worrying about, and nobody minds showing you twice.

Everyday life: school, and the years after

School is where late effects usually show up first, and it is where families most often go without help they are entitled to. Most children treated for a brain tumor do not use the school support that exists, even though testing their thinking and learning is considered standard care after a brain tumor.

Start early, and do not wait for your child to struggle. Ask the hospital who helps with school. A large children's hospital will often have someone whose job this is, and they can talk to the school for you.

In the United States there are two routes, and they are not the same thing.

• An IEP is a plan for special education services, under a federal law called IDEA. Children aged 3 through 21 come under one part of it. Babies and toddlers under 3 come under a different part, for early intervention.
• A 504 plan is for accommodations, under a different law that forbids discrimination. It does not come with funding attached, and an IEP does.

These are US laws. If you are somewhere else, your country will have its own route, and the hospital is still the place to ask.

Things that are reasonable to ask a school for: starting accommodations the day your child returns rather than after a bad term, less homework at first, extra time between classes, a second set of books to keep at home, and someone checking whether your child is simply too tired to work in the evening.

Ask again each year. Teachers change, and the research on school support says the next teacher often is not told any of this.

Follow-up scans, and the check-ups that come with them

Scans continue for years, and they spread further apart with time. Follow-up scans covers what each one is compared against, and waiting for results covers the gap before the answer.

Follow-up is not only scans. A visit usually includes a check of feeling, strength, balance, walking and reflexes, blood tests including hormone levels, and a hearing test.

What gets checked depends on what your child was treated with, not on what the tumor was called. That is how the standard US guidelines are built.

• Hearing. Some chemotherapy medicines, including cisplatin and carboplatin, and radiation to the head can affect hearing. Finding it early is what lets a school do something about it.
• Growth and hormones. Radiation close to the glands under the brain can affect the hormones that control growth and puberty. This is watched for years, which is why hormone levels are on the blood-test list above.
• Thinking and learning. See the section below.
• Later cancers. There is a small added risk many years later, higher after radiation. It is a reason follow-up continues into adult life, not a reason to expect it.

Ask for a survivorship care plan. It is one document listing what your child was treated with, what to watch for, and what should be checked and when. Childhood cancer is rare, and a family doctor may see one or two such patients in a whole career, so the document is often the only way that history travels with your child. Ask for an updated copy at each follow-up visit, and keep the records yourself. They matter most when your child is grown and seeing doctors who know none of this.

There is good material written for families rather than for doctors. The Children's Oncology Group publishes short guides called Health Links on individual late effects.

If it comes back

Which tumor your child has decides what happens next, so the page for that tumor is the better place to read. The tumor list has one for each type. The American Cancer Society suggests checking three things with your team: the specific type of tumor, how long scans go on for, and the risk of it coming back.

Three words get used, and they do not all mean the same thing.

• Relapse is when cancer comes back after treatment. It may come back months or years later.
• Recurrence also means it has come back.
• Progression means it is growing or spreading without ever having gone away completely.

Those last two are how doctors talk about cancer in general, not only about brain tumors. There is no agreed length of time that separates them, so ask which word your team is using and what they mean by it.

Your child's care team will talk the options through with you. A US children's cancer center says a child whose tumor has grown or come back may be able to join a clinical trial.

Two questions are worth asking before you need the answers: how will we know if it has come back, and what should we watch for? How long the risk lasts is not the same for every tumor, so ask about your child's.

Thinking, learning and memory

This is the part parents most often hear as brain damage, and it usually is not that.

For most children, the problem is not that skills are lost. It is that new skills are picked up more slowly than before. Children keep learning and keep developing. They may just do it at a slower rate than the children around them.

The parts most often affected are memory, attention, and being able to plan and juggle more than one thing.

It may not show up for months or years, often when school gets harder rather than when treatment ends. That delay is normal and it is not a sign that anything new is wrong.

Risk is higher for children treated when they were very young, and one review calls radiation to the brain a major contributor. Whether chemotherapy on its own causes lasting effects is genuinely not settled, and honest sources say so.

The thing that helps is testing, early. It turns "he is not trying" into a list of specific things a school can act on.

Talking to your child

You do not have to do this alone, and you do not have to do it perfectly. Your team can help with the conversation, or be in the room for it.

Telling your child is usually better than not. It is natural to want to protect a child from this. But children notice. A child who is not told will fill the gap with their imagination, and what they imagine is often worse than the truth.

Children often think it is their fault. They need to hear plainly that it is not, and they may need to hear it more than once.

Say it in words that match their age. A young child needs very little at once. A teenager can handle the whole picture and will usually go looking for it anyway, so it is better to point them somewhere trustworthy.

Practical things that help: practice what you plan to say, ask someone to be with you, and tell your child early rather than late, because it builds trust you will need later.

Trust yourself here. You know your child better than the team does.

Brothers and sisters

Tell them too, in words that fit their age. Siblings are often scared because they do not understand what is happening, and explaining lessens it.

Some of them quietly think they caused it, by something they said or thought or did. Say out loud that nothing anyone thinks, says or does can make somebody else ill.

Keep their life going. School, hobbies and friends should carry on. It is not a betrayal of the child who is ill.

Say the brave thing to them as well. Siblings hear constantly how strong the ill child is. They are being strong too, and nobody tells them.

Ask how they are, and then listen. Some siblings imagine hospital is fun, because that is where the presents and the time with you are.

There are support groups specifically for siblings, run online.

Who is on your child's team

Most children's hospitals have people whose whole job is this.

• A child life specialist explains what is happening in words your child understands, and can rehearse a scan or a procedure through play first. You can ask for them by name.
• A psychologist helps with how your child is coping, and with thinking and learning.
• A social worker helps with the parts nobody warns you about: money, travel, housing, work, and finding help near you.

Palliative care, which is not what it sounds like

Palliative carepalliative care: Care that helps with pain and other symptoms. It supports the whole family too. It can start early. It includes help with making choices about treatment. See the glossary can happen at any stage of an illness, at any age. It is not only for the last part of one, and asking for it does not mean anyone has given up.

It is a team whose job is symptoms, side effects and the strain on the family. It sits alongside the treatment your child is already having.

One thing here is specific to children. A review of palliative care for children with these tumors describes something it calls concurrent care, where children can receive hospice support while still having treatment aimed at curing the tumor. Ask your team whether that is how it works where you are.

Did I cause this?

Almost everybody asks this, usually in the first week, usually in private. It is worth answering plainly.

For most brain tumors, nobody knows the cause. That is the honest state of it. The exact cause of most brain and spinal cord tumors is not fully understood, and there are very few well established risk factors. Tumors start when genes that control how cells grow and divide are changed, and in most cases those changes happen by chance during a person's life. Not because of something done or not done.

Cell phones. They give off a kind of radiation called radiofrequency. It is not the same as the radiation in an x-ray. The energy is too low to damage DNA, and it is not known to cause cancer. The evidence so far is that using a cell phone does not cause brain tumors.

Stress. There is no scientific evidence that stress causes brain tumors, and no data linking stress to a higher chance of getting one. A hard year before a diagnosis is a hard year. It is not a cause.

Something you ate, or did not eat. No food and no diet is an established cause of a brain tumor. It is not on the list of known risk factors at all.

Something you passed on, or caught. Brain tumors are not contagious. Most are not inherited either. A small number of people do have an inherited condition that raises the risk, and if that applies to you, your team will raise it and offer to talk it through.

If you are turning this over at three in the morning, that is ordinary and it happens to nearly everyone. It is also worth saying out loud to somebody on your team, because they have answered it many times and they would rather you asked.

For childhood brain tumors specifically: most children who get one have no known risk factor at all. There is nothing you or your child could have done to prevent it.

No link has been found with cell phones, power lines, chemicals, or anything your child ate. And the lifestyle risks people associate with adult cancers, like smoking, drinking, diet and weight, are not known to play a major part in childhood cancers. If you have been going back over the pregnancy, or the months before the diagnosis, looking for the thing you did wrong, there is nothing there to find.

What might happen over time

For the person caring for someone with this

If you are the one driving to the appointments, keeping track of the pills, and lying awake at night worrying about them, this part is for you.

You are allowed to ask questions. In one study, families said they were afraid of annoying the doctor by asking too much. One of them was told by a doctor to stop playing doctor. Ask anyway. Write your questions down before you go, and bring a notepad. Two people in the room hear more than one.

Ask who your first call is. Care comes from a lot of people at once, and it is easy to end up as the only one holding it together. Ask the team: who do I call first? Some teams have one person whose job this is, often a nurse. Get the name and the number.

Get two numbers, and know which one to use. One for work hours, one for nights and weekends. Then ask what counts as "call us today" and what counts as "call an ambulance" for this tumor, and write the answer down where you can see it. If you are not sure which it is, call. Nobody on that team will mind.

If they have seizures, read about them before you need to. What to do when someone has a seizure is the one to know by heart. Living with seizures is about the rest of the time: what is safe, what to change, and driving.

Ask to be shown anything you are sent home to do. In that same study, families were sent home to change dressings and give medicines with no training at all. That is not fair to you. Before you leave the hospital, ask someone to show you. Then do it once while they watch.

Say what you notice. You may see a change before they do. Changes in thinking, mood and behavior can show up to the people close by first. Telling the team is not going behind their back. It is something the team cannot learn any other way.

Look after yourself, and let people help. Eat, sleep, and keep your own appointments. Take a little of the day back for yourself. When someone asks what they can do, give them a real job: a meal, a ride, an hour with the kids. Most people want to help and do not know how to offer.

You can talk to somebody about all of this today. See where to get help.

A note about that section, because this whole page is written to you. Everywhere else on this site, the caregiver section is the one part addressed to somebody other than the patient. Here it is the other way round. Read it as what it is: the general advice for anyone looking after somebody with a brain tumor, which applies to you as well.

Two things specific to being a parent.

You are allowed to need support of your own. When families are asked what was missing, parents' own emotional support comes up first, along with help finding their way around the hospital. Wanting that is not taking something away from your child.

You are the one holding the whole picture. Different people check hearing, hormones, learning and the tumor itself, often in different clinics, sometimes for years. Keep your own file. Nobody else has all of it.

What to ask your team

• What is my child's tumor called, with the full name and any gene results?
• Was this treatment plan worked out for children, or from studies in adults?
• Will my child need medicine to sleep for scans, or for radiation?
• Can I stay with my child until they are asleep?
• What is being done to keep radiation away from the rest of the brain?
• Who at the hospital helps with school, and when should we start?
• Who checks hearing, hormones, growth and learning, and how often?
• Can we have a survivorship care plan, and an updated copy each visit?
• Should we meet the palliative care team, and what would they do for us?
• Is there a child life specialist we can see before the next procedure?
• What would make you want us to call before the next appointment?
• Who do we call after hours, and what is the number?

Where to get support

• Getting help now if you need to talk to somebody today.
• The Pediatric Brain Tumor Foundation runs online support groups for families, led by a mental health professional, including a group for brothers and sisters.
• Together by St. Jude is written for families of children with a brain or spinal cord tumor.
• The Children's Oncology Group publishes short family guides on individual late effects.
• Your child's specialist nurse, who is usually the quickest person to get an answer from.