The DIPG / DMG Resource Network

Making Memories After Diagnosis

The Desserich Family making memories at Disney World in 2007

Dealing with any brain cancer is never easy.  Often times it can be a battle between the clinical nature of treatments and quality of life as families struggle to adapt to the new norm.  As part of this struggle, it is customary to focus on making memories, whether facing a terminal diagnosis or not.  Even beyond creating memories, often these simple actions can provide an outlet both for children and parents that can take them “beyond the cancer” and even provide therapeutic or emotional stability.  Activities that can often help include:

  • Creating a journal – Whether it is a written or verbal journal, the creation of one can help prioritize values and gain perspective on the fight ahead. Keep in mind that this can be good both for the child, but also the parents.  Although online blogging can be an element of a journal, keep in mind that is important to also have something private that allows the honest reflections to come out without being shared.
  • Learn a new skill – Find books and activity kits for origami, baking, balloon animal making, paper airplanes or even sewing. These not only are great ways to bond as a family, but can also serve as vital distractions while waiting for doctor’s visits and treatments.  Best of all, it can allow small children a way to contribute.  Keep in mind that it may make sense to involve all members of the family in these skills and not just the patient. 
  • Start a “wish” list – Even beyond tangible items, focus on building a list of all the things your child wants to do after he or she leaves the hospital. Sometimes you may find that it is the simpler items like visiting a special restaurant that hold the most appeal in their eyes.
  • Find value in the everyday – Look for opportunities to enjoy a picnic lunch or a campout in the backyard. Redecorate their room.  Write a letter to relatives out of town.  Get a joke book and each day have a competition to see who has the best joke.  Take a walk to a bakery for morning donuts.  Find a local observatory and visit one night late during an open house to catch a glimpse of a comet.  Find a field or large parking lot and let a younger child “drive the car” (while obviously you control the pedals).  Any adult task can see like a big dream to a child that hasn’t tried it before.
  • Make a keepsake – This could be as simple as a hand print or foot print cement paver or even a box of favorite items. Keep this in your child’s room for them to add to as they see fit.
  • Inspire the community – While in the fight you’ll no doubt find your community willing to support. Ask for their help in support of an art auction to benefit cancer research, do a shaving fundraiser, do a Caps for the Cure event at the school or simply have them send your child messages of support through the mail.  All of these tell your child they are not alone and they haven’t lost their friends while they are battling.

Above all, have fun.  Memories aren’t as much about what you do as much as they are about how you and your child feels about the experience.  Remember that humor, while difficult, is also a way to deal with cancer.  Inspire them to laugh, smile and have fun – and with it, they’ll remember they too are still a child.