The DIPG / DMG Resource Network

Practical Advice from Parents for Newly Diagnosed DIPG Families

The Desserich family, making memories soon after DIPG diagnosis

A cancer diagnosis is difficult enough but when the diagnosis is for a child, it’s life-altering and one of the single most devastating events in a parent’s life. There is no set path to trek when handling a childhood cancer diagnosis. Advice from parents who have been down this road can provide hope and tips for handling treatment and making memories.

We’ve compiled a list of advice and tips for newly diagnosed families based on responses we received from parents in our DIPG Facebook support group who have been down this road. This advice is not from medical professionals, but it can provide invaluable information that can help you through this journey.

Disclaimer: Names have been modified to protect the parent’s privacy.

Ask Questions and Take Notes

  • “You will be so overwhelmed with all the information at first to think of everything you want to ask. Write down every question as you or a family member think of it. Making a list will be so helpful when talking to your oncologist.” – L.B.

  • “Write things down - questions, answers, words you want to look up, etc.” – A.L.

  • “No question is a dumb question. Write things down that you notice or want answers to because we know our children the best. Ask for resources to support groups and foundations that can help you and your child.” – D.S.

Bring Another Set of Ears to Important Doctor’s Appointments

  • “Have someone go to the appointments with you and take notes. My husband and I would both go, and we would walk out with a completely different recall/understanding of what the doctor said! You can’t process everything that is being thrown at you on top of the emotional distress you are under.” – E.H.

  • “It is always good to record so you can relisten. Lots of information.” – H. (Before recording a doctor, make sure you have their permission because it is illegal in many states to record a person without their knowledge.)

Get a Biopsy

  • “Definitely get a biopsy! Look into trails after radiation and spend every day with your child like it is their last; you never know when the decline will happen.” – B.B.

  • “Get the biopsy even if your oncologist and radiologist say it isn't needed. You're extremely likely to need the information later to make intelligent decisions about emerging treatment options.” – K.R.

Get a Second Opinion

  • “Get multiple opinions and an oncologist (or treatment team) who will talk strategy and game plans for fighting cancer.” – D.A.

  • “Register for the International DIPG Registry. By doing this, your child’s MRI can be peer-reviewed by the best in the business to see if there is anything they might identify as abnormal or as another type. The biggest help is that the Registry has nearly 1,200 DIPG/DMG samples to compare to, which is about eight times what any other database offers. And with information, numbers are key.” – Keith Desserich, Chairman of the Board for The Cure Starts Now

  • “Get multiple opinions. Don’t be afraid to try alternative methods of treatment, but don’t wait until it’s the only option left.” – H.S.

  • “Seek other opinions and be open to non-traditional therapies.” – N.P.

Don’t Second Guess Your Decisions

  • “Don’t ever feel guilty about making one decision over another. You are doing your very best. You love your child, and your child loves you.” – H.S.

  • “Don't look back or question the decisions you make. You are making the best decision for your child with the information available, and every case and child is different.” – D.A.

  • “Be easy on yourself.” – R.W.

  • “Never compare your child and their treatment to another child’s; they are each beautifully unique.” – K.F.

Keep Hope Alive

  • “Know the reality of the diagnosis, but live with hope. Be honest, in an age-appropriate way, with the child and his/her siblings.” – S.S.

  • “Don’t lose hope. PRAY.” – H.S.

  • “Be patient with yourself. Those first couple of days and weeks are super rough, but always keep hope!” – G.F.

Connect with Other Families Who Are in the Fight Through Support Groups

  • “Reach out to others. Google support groups if needed. See if your hospital hosts momcology meetings. Just knowing you are not alone is a big step. Celebrate all the victories, no matter what they are. I found saying hi to other parents in the hall made me feel better, even if I didn't get one back.” – D.S.

  • “Talk to other parents that have been in your shoes.” – H.S.

Get one-on-one DIPG support

Join the DIPG Support Group for Families

Make Memories, Take Photos and Videos

  • “Take a billion pictures and videos of your family as it is now. I took a TON and still wish I had taken more. Be honest with yourself. Try not to lose hope. Take more pictures.” – K.U.

  • “Take videos, lots of them. If your child is feeling good, go to Disney, take a trip, make memories. We had a great 16 months with our daughter; she wanted normal, so we gave it to her. Don’t think about tomorrow, you can’t change it.” – M.F.

  • “Spend every single minute you can with them making memories!” – S.H.

  • “Find joy anywhere you can. Cling to it. Create it. Live it. Love it.” – K.H.

Accepting Help from Others Can Make this Journey Lighter

  • “Accept Gifts. Even if you are a giver and it difficult to accept gifts, do it. This is a hard path. It is so expensive. It changes your whole world. You will give back in time and to the next family along the way. Accept the gift. People want to help because they either have been where you are or can’t imagine ever being where you are. Either way, it does both your heart and theirs good to share the bond.” – L.W.

  • “Accept help. Loads of people truly want to help, those you know and those you don’t. Let them. Accept the food, the gifts, the errand running. Your job is to focus on your child. Put down your phone. Give all of your attention to your family.” – by T.V.

  • “Don't be afraid to ask for help. Make a page for all your updates and have someone manage it for you, set up a GoFundMe page so you can take off work to spend every minute you can with your child, have someone set up meal trains for you, and take a Make-A-Wish trip as soon as you can!” – S.H.

Take Care of Yourself

  • “Don’t think too far out. Take it a moment at a time, or it gets overwhelming. Nap when your child naps; you need your rest, and you are no good if you don’t have any sleep.” – J.M.

  • “LOVE, for yourself, for each other, your child, and other children in the family. Try to take it one day at a time.” – Y.B.

  • “For everyone it's different. For me, I gave every ounce of strength I had to my family. Don't let the diagnosis dictate your daily life. Celebrate every win, no matter how small. Tell your child you are proud of them every day. Be involved in everything but, you don't need to become a doctor in order to help your child; your child doesn't want you to be their doctor, they want you to be Mom or Dad. Always fight for your child but be kind to everyone who helps in their care. Your child could be the one whose treatment leads to a cure.” – E.B.

  • “Remember it's okay to not be okay mentally. Seek out mental health care for your family, if needed. My daughter and I needed it during treatment and, by the time we were able to get an appointment, it took 10 months. Taking care of the body and mind is so important.” – D.S.

  • “No Dr. Google! That can make folks spin, and your sanity is paramount. One of our best “medicines” was remembering to find joy and happiness- even if for fleeting moments. Your child is watching how you handle it. Our kids are so tough. Keep them happy, however possible. Every journey is unique, but you aren’t alone!” – G.F.

Learn more about what to do after diagnosis