Advice from Other DIPG Parents

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'async':true, 'host':'wufoo.com', 'header':'show', 'ssl':true }; s.src = ('https:' == d.location.protocol ?'https://':'http://') + 'secure.wufoo.com/scripts/embed/form.js'; s.onload = s.onreadystatechange = function() { var rs = this.readyState; if (rs) if (rs != 'complete') if (rs != 'loaded') return; try { m1dv0k7b0bt96w5 = new WufooForm(); m1dv0k7b0bt96w5.initialize(options); m1dv0k7b0bt96w5.display(); } catch (e) { } }; var scr = d.getElementsByTagName(t)[0], par = scr.parentNode; par.insertBefore(s, scr); })(document, 'script'); </script> </div> </aside> <article class="col-md-9"> <h1>Advice from Other DIPG Parents</h1> <p class="lead">The parents we spoke with shared some very personal insights into their experiences that may be helpful advice for others parents. Some of these are reflections or quotes about a parent鈥檚 outlook or important things that they tried to keep in mind while going through this same process with their child.</p> <h3>About Relating to Children</h3> <ul> <li>Know your child, their personality, interests, coping styles, and preferences for support.</li> <li>Have important conversations sooner rather than later. Have important conversations about topics such as illness, life, death, your love for them, and spirituality as early as possible. Although these can be emotionally difficult conversations to have, they get even more difficult once children have a harder time communicating.</li> <li>Keep communicating. When a child can no longer express themselves to others, it can be hard to know whether or not to continue to talk to them. Communicating through story-telling and touch (including a hug, gently squeezing or rubbing a child鈥檚 arm) can convey love, warmth, affection, and provide great comfort to a child.</li> </ul> <h3>About Relating to One Another as Parents and as a Family</h3> <ul> <li>Try to work together鈥攁s a couple, as parents, and as a family.</li> </ul> <h3>Asking Questions and Asking for Help</h3> <ul> <li>Whatever you want to know, <a href="/contact/" title="Contact">ask</a>. If there is anything you have wondered or worried about, do not hesitate to ask a member of your child鈥檚 health care team.</li> <li>Whatever you need, ask. Different services will be available depending on the hospital or the community where you live. Ask a member of your child鈥檚 health care team to help you find resources near you.</li> </ul> <h3>Other Resources</h3> <ul> <li><a href="/blog/grieving-daily-and-how-to-cope/" title="Grieving Daily and How to Cope">Grieving Daily and How to Cope</a></li> <li><a href="/blog/making-memories-after-diagnosis/" title="Making Memories After Diagnosis">Making Memories After Diagnosis</a></li> </ul> <footer class="footnotes"> <p> Content used with permission from the <a href="https://www.acco.org/" target="_blank">American Childhood Cancer Organization</a>. Hoffman, Ruth, editor. <em>Understanding The Journey: A Parent鈥檚 Guide to DIPG</em>. American Childhood Cancer Organization, 2012. Print. </p> <p>Contributing Author:聽Deborah Lafond, DNP, PNP-BC, CPON, CHPPN</p> </footer> </article> </div> </div> </main> <footer id="footer"> DIPG.org is proud to be a part of <strong>The Cure Starts Now Cancer Resource Network</strong>:<br /><a href="https://thecurestartsnow.org" target="_blank">The Cure Starts Now</a> | <a href="https://curecancer.org" target="_blank">CureCancer.org</a> | <a href="https://dipg.org" target="_blank">DIPG.org</a> | <a href="https://medulloblastoma.org" target="_blank">Medulloblastoma.org</a><br /><br />10280 Chester Road, Cincinnati, Ohio 45215 | 513-772-4888<br />Copyright 2022 The Cure Starts Now. All Rights Reserved.<br /><br />Special thanks to the <a href="http://dipgregistry.org" target="_blank" rel="noopener">DIPG Registry</a> and <a href="http://dipgcollaborative.org" target="_blank" rel="noopener">DIPG Collaborative</a><br /><br />Image Courtesy the Waneka Family and C. 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Advice from Other DIPG Parents