What I Wish I Knew At Diagnosis

As I see kids with a new DIPG diagnosis, it takes me back to that hospital meeting room and I remember exactly what I felt at that moment.  The shock and horror to learn your child has a terminal diagnosis.  Now that we’ve been battling for over seventeen months (click here to read Dylan’s story), I thought about things I wish I knew on that day.  While most of these ideas are specific to DIPG, many would apply to any terminal diagnosis. 

*Do not blindly accept what the doctors tell you.  I mean no disrespect to the medical community, but we were essentially told to “go make memories”.  We aren’t naive to our survival odds, but we made the decision to fight like hell and explore every possible option.  The ultimate goal being survival until something is found to either cure or greatly extend life.  We can honestly say no stone has been left unturned. 

*You must be the captain of your own ship.  You get to dictate everything.  Work with the physicians but know that they may not have a cure or possibly even a long term solution for you.  We consult with both traditional and natural providers and have created a plan from that.  We have had to advocate for Dylan and fight for what we want. 

*Do not wait.  One of our biggest regrets is waiting almost 2 months post-diagnosis to start traditional medical treatment (radiation).  We believe we could have preserved more mobility had we acted immediately.  There are several reasons we waited, including the medical team being slightly puzzled by the presentation of Dylan’s cancer, which is atypical.  As one of our advisors told us, the cancer doesn’t wait or take a break, nor should you. 

*Accept help.  Jeff and I struggled (and still struggle) to accept help from people.  We are used to being the helpers and it has taken a major shift to admit we need help.  People want to help.  They want to do something.  Honestly, my faith in humanity has been restored as I’ve witnessed how generous and caring people are.  People from near and far have supported us in many ways.  We also have an amazing tribe of people surrounding us and helping us daily with Dylan, Mason and even our pets!

*Do not forget to take care of yourself.  As the caregiver, you will be in shock.  Everything that used to matter in your life will fall to the wayside and the only thing that will matter will be your child.  Do not feel guilty to take the time for yourself.  Exercise, meditate, whatever you need to do to maintain your sanity.  You will be a better caregiver because of it.  Click here to read my top strategies to manage chronic stress.

*There are no wrong decisions.  As another DIPG parent told us, “no matter the decision you make, it is the right one”.  Some parents choose not to pursue treatment and that is the right answer.  Some parents choose to do everything and that is also the right answer. 

Life will be an emotional roller coaster.  There will be many ups and downs, often in the same day.  Joy still exists, but you must work to choose it.  There are many days that I just cannot choose joy and the shadow is too strong.  On those days, I sit with it and know I will feel better.  Hold on tight to those you love, your faith, or whatever gets you through.  We were sent this poem early in our journey, and it continues to resonate with me:

“We did not ask for this room or this music. We were invited in. Therefore, because the dark surrounds us, let us turn our faces to the light. Let us endure hardship to be grateful for plenty. We have been given pain to be astounded by joy. We have been given life to deny death. We did not ask for this room or this music. But because we are here, let us dance.”  -Stephen King