Coping Support for Siblings
The medical "world"
When someone in your family has cancer, you’ll hear a lot of new words and meet a lot of new people. Walking into a hospital or treatment center can feel like stepping into a different world!
It’s normal to feel like you’re full of questions, especially at the start of your brother or sister’s cancer journey. Even adults feel this way. If you talk to your grownups, you’ll probably find out they ask a lot of questions, too!
So what is this new world? When doctors treat kids with brain cancer, they call it pediatric neuro-oncology. “Pediatric” (or “peds” for short) means children, “neuro” is a fancy way of saying the brain, and “oncology” is cancer treatment. These are three words you can expect to hear a lot. Some kids like to write down the new words they learn or the experiences they have. That way, it’s easier to remember everything.
How can you get answers to your questions? There are plenty of ways to find out, and plenty of people to talk to.
- Your grownups will have answers to a lot of the questions you may have. When they don’t know the answer, they can help you find someone who does. There may be times when you don’t feel comfortable asking your grownups a question, and that’s okay. Just remember they’re there for you. Remember, too, that it’s okay to ask about hard or scary topics. Your grownups want to help as much as they can.
- Child life specialists and child life interns work in many hospitals and clinics where kids are treated. If you visit your sibling during treatment, you can ask to meet the child life workers, too. Their job is to make treatment easier by teaching kids about the medical “world.” They also have fun games and activities for you and your sibling to do!
- Your sibling, just like you, is learning a lot on this cancer journey. If you want to know what it’s like to have an MRI or stay overnight in the hospital, who’s the best person to ask? Someone who’s done it.
- Doctors and nurses may be very busy, so it can be hard to get the chance to talk to them. If you’re there when your sibling gets treatment, there might be time for questions. If not, maybe your grownups or your sibling can listen to your questions and get an answer for you.
- The internet is a resource - but you should use it carefully. Many scams and lies can be posted online. Even a trustworthy website can have old or outdated information. If you’re ever not sure whether something online is true, show it to a trusted adult (like a parent or teacher) and ask. DIPG.org is the best place to find reliable and up-to-date information about DIPG/DMG.
You might want to keep a journal or notebook of questions, too. That way, if you think of a question, you can write it down to ask later.
Sometimes, even when we really want to know the answer to a question, it can feel a bit scary to ask. At times like this, it helps to write the question down. You can always ask it to someone when you feel ready.
Changes at home
Your grownups know that you’re old enough to understand a lot about your brother or sister’s fight against cancer - and old enough to help, too. No one expects you to be a doctor or nurse. But having a sibling with DIPG/DMG can mean more responsibilities, and more opportunities to be helpful.
When your sibling has to go to doctor appointments: You might spend more time alone, or at a friend’s or neighbor’s house. Take it as a chance to have fun! You and a friend could plan a big project you might not normally have time for, like writing a novel or building an outdoor hideout. If you’re home alone, this is your chance to do what you like to do without anyone bothering you - whether it’s listening to loud music or watching your favorite movie three times in a row.
There may also be times you have to go with your sibling while they get treatment. Remember, this is a great opportunity to learn about the medical “world” and get answers to your questions. If you have to spend a lot of time at the hospital or clinic, talk to your grownups about a quiet activity you can bring, like a book of puzzles or a tablet with headphones.
When your sibling gets more gifts, attention, and fancy things than you do: It can feel like people forget you’re even there! When someone gets cancer, that can make others feel like they need to spend a lot of time and money on that person. Sometimes, adults don’t know what to do to help, either. Giving gifts and paying lots of attention to someone is their way of trying to help. It doesn’t mean they love you or care about you any less than they did before.
If you feel invisible, talk to your grownups about whether you can schedule time that’s just for you. Maybe you can arrange a movie night at home, a trip out for ice cream, or a small outing with some friends. It doesn’t have to be fancy. The important thing is to have space and time where you can take a break from cancer. It’s always okay to ask for a break!
When your brother or sister needs to miss school: You might be in charge of picking up their homework assignments, important papers, and notes from the school. This is a little thing you can do that means a lot! Your sibling’s teachers and classmates are thinking of them, too.
When your family can’t be together: This doesn’t happen to everyone, but in many cases, a person with DIPG/DMG can’t get treatment close to home. They have to travel to different hospitals and doctors where new treatments are available.
If your family needs to be apart, see if you can stay connected by making phone or video calls, sending emails, or using an instant messenger site (like Google Meet or Discord). Even a quick message to say “Hi” or a photo of your pet can go a long way to helping things feel a little more normal.
What to say to others
Whether it’s someone you’ve known all your life or a new classmate, it can be hard to figure out how to tell someone else about your family’s cancer journey. You know a lot about this new life and new world. They don’t.
You’re the expert on DIPG/DMG when you’re at school or with your friends. Some kids say they even feel like a scientist or doctor when they can tell other people all about what’s happening.
People may react in all kinds of different ways when they hear you have a family member with cancer. Remember, most of them want to help and are kind. But many people don’t know what to say, and that can mean they say things that might sound weird or frustrating. They may also get so worried about saying the wrong thing that they feel afraid to talk to you at all.
The best thing you can do is be open with people. You might try saying something like, “You don’t have to act different around me just because my sister got cancer. I’m still the same person I was before this happened.”
If you’re dealing with a lot of bad reactions from people, or you don’t know what to do, remember you can always ask a trusted adult for help.
There might be times when you want to tell other people what’s happening with your sibling, and times when you don’t. If you feel uncomfortable talking about it, you may want to ask your grownups to tell people at school what’s going on. It can also be a good idea to think carefully - before you tell anyone - about what you do and do not feel okay sharing.
You do not have to tell other people anything at all if you don’t want to. A person’s medical information is private. No one, not even your best friend or next-door neighbor, is entitled to know what’s happening unless you want to tell them.
What if people ask questions you can’t or don’t want to answer? It’s fine to say, “That’s private,” or, “I don’t like to talk about it.” You don’t have to share anything you don’t want to.
Some families use websites like Facebook or CaringBridge to share updates. That way they can share the news with everyone at once, instead of having to tell each person separately every time. If your family has one of these sites, you could suggest people check there for updates. Never create a page like this - or share anyone’s medical information online - unless your grownups say it’s okay. They may want certain things to stay private.
Coping with feelings
Having a brother or sister with cancer can feel like riding an emotional roller coaster! You might have lots of different feelings.
Many kids say they feel:
- scared about what will happen,
- angry that things are different from the way they used to be,
- jealous when their sibling gets more attention and fancy things than they do,
- guilty, because they know it isn’t their brother or sister’s fault for being sick,
- down on themselves when they remember times they were mean or unkind to their sick sibling,
- sad about the diagnosis,
- confused about all there is to learn,
- embarrassed when their brother or sister looks or acts differently than he or she used to,
- and worried that they will get cancer too.
When your emotions are too much for you to handle, try to let them out in a healthy way. Here’s a trick: rate your emotions on a scale of one to ten, with one being no big deal, and ten being so overwhelming it’s all you can think about.
If the number you picked is between one and five, focus on distracting your mind. Do you like to write, draw, or journal? Solve crossword puzzles or word searches? Try spending time with a pet or with a person you love. Call a friend, or one of your grownups. You could also focus on other things by going over something you’ve memorized - like a favorite poem or your multiplication tables. You can even listen to your favorite songs on repeat and focus on trying to hear every word.
If none of this works, or if the number you picked is between six and ten, it often helps to let your feelings out physically. Punch or scream into a pillow. Take the dog for a run around the block. Write an angry letter and rip up the paper. When you feel as overwhelmed as this, you need time and space to express it before you can move on.
It's okay to have lots of feelings, and it’s always okay to ask for help.