If Treatment Stops Working
Progression
It’s one word that says a lot. If a DIPG/DMG is “in progression,” that means the tumor is growing bigger.
Some people don’t know they’re in progression until a doctor sees it on the MRI. Other people have symptoms (like bad headaches or trouble seeing) right away. Having symptoms doesn’t always mean a person is in progression, but it’s usually a reason to check with a doctor to make sure.
If this happens to your brother or sister, it can be a very scary and upsetting time for everyone in the family. You may be dealing with some difficult feelings.
Some kids are angry at the grownups, the doctors, or even themselves. They feel like there was something somebody did - or forgot to do - that made the treatment stop working. But it’s nobody’s fault if the cancer is in progression. Doctors don’t know what causes DIPG/DMG to grow again, just like they don’t know what causes this kind of cancer in the first place.
You may also feel sad. It’s hard to know your brother or sister is getting sick again.
Any way you feel is okay. Take the time to let your feelings out in a safe and healthy way.
What happens now?
Someone who is in progression can still have times where they feel okay, and times they can do a lot of the things they could do before. There may be good days and bad days.
Even after progression, there are ways doctors and nurses can help. Your brother or sister will still get treatment, but this kind of treatment might be different from the treatment they used to have.
Here are two new terms you might hear: palliative care and hospice. These are sometimes also called comfort care. This kind of treatment will not cure the cancer, but it can help your brother or sister feel better.
How to interact with a child in progression
As the cancer progresses, it can be hard for a person to do the things they used to be able to do. Many kids wonder if their brother or sister can still play and talk with them.
The answer is YES! There are plenty of things you can do together.
Think about the things your brother or sister likes to do. See if you can talk to an adult about ways to change up the activity. If your sister loves to swim, maybe she still can, as long as she uses an inner tube and has an extra person in the water with her. If your brother enjoys wrestling, maybe the two of you can go to a match and cheer on his friends.
Not sure what to do? Here are some ideas.
- Play board games, like Battleship, Yahtzee, or checkers.
- Read them a story, or make up a story yourself.
- Make a sensory bin. With an adult’s permission, fill a small plastic tub about halfway with soapy water. Some kids like to add bath toys. Others just want to stir and splash the water with their hands. This is a good activity for outside. (If you don’t want to use water, you could also fill a sensory bin with uncooked beans or oats, packing peanuts, water beads, shaving cream, or flour.)
- Put on a play using stuffed animals or other toys.
- Grab some remote control cars and race them.
- Paint, color, or draw pictures.
- Make sculptures out of play dough or clay.
- Watch movies or TV shows.
- Listen to music together.
- Make craft projects to decorate the room. You might make paper chains, coffee filter snowflakes, pictures, cutouts, or mobiles. You can use a site like WikiHow for how-to articles, or check out a craft book from your school library. Ask an adult to help you hang your crafts on the walls or ceiling.
- Put together a jigsaw puzzle.
Your child life specialist or comfort care team may have other ideas.
Having DIPG/DMG doesn’t change what a person can understand. You can still talk about all the things you used to. If it’s hard for your sibling to speak, they might use sign language, write or type what they want to say, or use an aid. Click here to download DIPG.org’s communication board. Many children use a picture board like this by pointing to what they want to say.
It can feel strange at first to talk to someone who can’t talk back, even though you know they can hear you. Try to remember, even if your brother or sister looks and acts differently, they are still the same person as before. They still want to spend time with you, and they like having you around to talk, play, and just be together. It’s okay to feel scared, angry, worried, and love them all at the same time.
The dying process
It’s very normal to wonder about what will happen to a person who is dying. The process is a little different for everyone who has DIPG/DMG. If you have questions, you can ask your grownups, a child life specialist, or the comfort care team.
A lot of kids need to talk about death, but they avoid it because it feels too sad to bring up. It may be easier to write a note instead of asking out loud. Of course, there may be times you don’t want to talk, and that’s okay, too. Everyone experiences death differently.
Sometimes, doctors will make a guess or estimate of how long they think a person will live. Remember, this is only a guess. It doesn’t matter how smart a doctor is or how many kids they’ve treated before - they can’t predict the future. The guess may be right or it may not.
The best thing you can do during this time is make the most of your time with your sibling. This means enjoying your time together and trying not to worry about what will happen six months, a year, or five years from now. It can be hard to do, but try to focus on today. We call that “the here and now.” No one can guess what tomorrow will look like, but we can see what is happening today.
What happens after someone dies?
After a death, the family usually has a ceremony called a funeral, memorial service, or celebration of life. These events honor the person who died. Just like each person is unique, each ceremony is unique, too.
You may want to be involved in the service. Many kids say this helps them to feel better. A kid can help to plan the ceremony, or have a special job on that day. Scattering flowers, giving a speech, or reading a poem are a few ways to be involved. What if you don’t want to have a part in it, or you don’t want to go at all? That’s normal, too, and it’s okay. Only you can decide what feels right to you.
There are many different beliefs about what happens after someone dies. You might want to talk about it with your grownups or a religious leader.
Some people are buried in a casket. Others are cremated, or turned into ashes. The ashes might be kept at home in a container called an urn, or scattered or buried in a place that was special to the person who died.