Each month, the Children’s Brain Tumor Tissue Consortium highlights the stories and contributions of families, foundations, and researchers to find cures for pediatric brain tumors. If you would like to share your story as a guest blogger, please email email@example.com
By Joan Kerpan, Kyle’s Mom & Founder, Kyle Daniel Kerpan Foundation
From the heart…
When you write of a child’s brain tumor journey, you attempt to retell to others all that is a part of it. You want the world to know all that your child endured, to truly feel the wrath of this beast. You document the medical terms only to somehow provide some type of formal identity to what is going on with your child. It lets others maybe look it up and find the description of what these tumors are, to see the medical version of what they do. That version being clear and concise, without feeling.
You document the emotional moments which are endless and can be ever so difficult to physically get down on paper. The ebbs and tides exhausting to relive and pay justice to as you write them. You want the reader to enter your world and to feel for a brief time what it is really like. You tell of what you might call the stages neat and in an understandable package. Diagnosis, treatment, stability, reoccurrence and so on. But that package is not so neat; it gets opened and closed many times over. Sometimes it is wrapped beautifully with a big bow on the top, other times it is tattered and broken.
I have known so many little ones that we have lost to this disease, that package now empty with nothing inside. I have cried with their moms and their dads and sisters and brothers. I have been to their funerals and I have seen and felt the heartbreaking aftermath of their loss. How do you accept that you are not able to save your child? I don’t know how I ever did, or if I ever did. I heard the words; I felt the pain, the helplessness, the paralyzing fear that what you were hearing was actually true and was happening to your child. How do you tell an 11 year old boy that you had worked endlessly to save that he was going to die? How do you tell his 11 year old twin sister the same ? Kyle never heard those words from me. I don’t think it was planned or intentional; it was just silent buried within my mind, safe and away from Kyle. I never gave up the hope and possibility that they could be wrong. When that moment finally came Kyle was in a peaceful state, unresponsive to me as far as words or gestures, our hearts and our souls as always interchangeable… I found the words I wrote to him at that moment:
“I told Kyle I was so sorry we could not save him. I looked at him as I said it and then I knew Kyle never felt he hadn’t been saved, he never felt the depth of his disease. Just looking at him I knew right then that he never felt that there was any need to be sorry for anything. Life for him is good and so I will keep it that way with no apologies for what could have been. His life has touched so many and will continue forever to do that. Then I told him he was so so brave and yes that was the very right thing to say, I could feel my heart lift up as I said it. “
There is an unknown, indescribable strength that lives within the hearts of parents with kids with brain tumors; only with that strength could I ever have been able to write those words at such an unbelievably difficult time.
But it is truly the strength of these children that sustains you as you journey on through the battle. I end my words with those of Kyle’s. On the eve of his 11th birthday just weeks before he lost his battle he was interviewed by our local newspaper…these were his words when asked what advice he had for other children with brain tumors…
“ I would just say to ignore the pain, try to think of something else…that’s what I do when everything is hurting…think of those you love…like with me. I like cookbooks or fishing books…or music, my favorite is Phil Collins…
Joan Kerpan (Kyle and Tessa’s mom)