The Diffuse Intrinsic Pontine Glioma Resource Network

Grieving Daily and How to Cope


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Keith Desserich with his daughter Elena in 2007

One parent’s personal journey to deal with the loss of your child from cancer.

Losing a child is nothing you can prepare for.  Often you never want to admit it even after it happens.  I know, I’ve been there.  After losing our daughter to DIPG, our response was to form a community and over the years we’ve met many other families that have walked the same path as we do daily.  And while I don’t ever profess to have the solution to grieving, we have found ways to cope that many other families have used as well. 

  • We choose to celebrate only her birthday. After her death, my wife and I made a vow never to celebrate the cancer that took her, only the blessing of her birth.  Certainly we know the day we lost her, the day of diagnosis and even each step of the therapy, but unless forced to we try to focus on the good memories.  In celebration of her birthday we release balloons carrying a simple card.  It is a simple celebration and there will be tears, but it is how we choose to remember her.  Smiling, happy and in joy. 
  • We find a way to deal with loss over the holidays. For us, it is in the form of a special tree we decorate as a family in our kitchen that holds ornaments made from the memories she left us with.  We felt this was important because it kept her in our hearts during a difficult season.  In truth it is also a sense of joy.  We love looking at the tree and reliving what she left us with.  To make sure that we also show our love for our other two girls, they too have trees of their own.
  • My wife and I made a pact to never be depressed on the same day. Early on, we even had to claim the day the moment we woke up, thereby forcing the other to paint on a smile and spend the day trying to pull the other one up.  This kept us from building on an avalanche of depression and sadness that might have torn us apart.  Ironically even the action of “claiming” a day was silly enough that it too even helped to keep us looking at the positives that our daughter showed us during her 5 years.
  • We choose to help and connect with other children and families. Even the simple effort of being involved is an act of therapy to combat grieving.  And just when you think it is too painful to meet another child or talk with another family you often find it can be where healing starts.  Even we were hesitant to help, meet or talk with other families initially.  Now we know that doing so is like spending another day with our own child.

These are not lessons for everyone, just us.  You may have other suggestions and perhaps this is the forum to share those suggestions.  And through us all we may heal families as well as our children. 

Have suggestions of your own? Please contact us and let us know.