The Cure Starts Now

Don't Tell Mom and Dad

Grace is a sibling of Elena Desserich, who was diagnosed with DIPG in 2006

Yes, I am part of the exclusive club, Cancer Siblings. It isn’t quite the club that anyone wants to be a part of and it frankly isn’t one that anyone asked to join. It is just made of people who are bystanders to some of the worst pain that children have the chance to go through. You have to watch as your family is altered forever and as your sibling, the one that you looked up to or took care of, withers away, as the scientific community just shrugs in response. This pain is different from all other relationships in this fight.

You could point to the obvious, that siblings are the most genetically similar familial relationship. But this bond goes so much deeper than even science can explain. It is a bond that you never feel the pain of until it is ripped right out from under you.

Your siblings are the ones that you grow with. They see the unfiltered darkest moments and help pull you out. They also get to see you when you are on top of the world usually over things that are trivial as you look back on it. Our siblings are the ones that we confide in, the ones that we whisper “Don’t tell Mom and Dad but…” in their ear maybe a few too many times. They are our built-in best friend and our lifetime companion, and most importantly the person who just gets you, at a core level, without even having to try. They never have to spend the time to get to know you, because they already do. They are your “person” before you even know what it means to have one. Then you hear the C-word for the first time.

To help continue Grace's mission in fighting pediatric brain cancer, please consider nominating someone for the "Best Sibling Ever" award:

At first, most kids don’t know exactly what this means, sadly a lot are too young, but that doesn’t mean that they cannot feel it. You feel it in your siblings’ frustration and defeat through the whole process. You see it in the poking and the prodding, and all the ugly parts. For a lot of families, this takes the form of separation, as they try desperately to seek treatment in faraway places. And somehow...deep down… you know what is coming because you lose the child in them, the sibling in them, long before you actually lose them. That sibling will always be held in your heart, but eventually, there is no ear to whisper into.

There are many ways other members of the family pick up the pieces and try to cram them into mismatched places after losing a child, but siblings, being so young, are left with some of the greatest hurt left staring at their fallen pieces. This kind of hurt is different, we all experience the hurt and anger and longing of losing someone close to us, but for siblings, there is an element that is often overlooked: confusion and fading memories.

I was four years old when my sister, Elena, died. She was my best friend (so I’m told). One of the worst parts of my experience is that I don’t remember much about her or her battle. Some might read that and think it’s a blessing, and it is to a certain extent, but that is the very factor that makes healing the hardest. Elena lives on in the words of others to me. I have very few organic memories (some of which could just be vivid stories, but I can't really tell) but somehow, I know that our connection was strong, because of the emotion and untamed passion behind everything that I do and stand for now in Elena’s honor.

I think that the way that I picked up my fallen pieces is what has given me the strongest connection to a sister that I don’t even remember. I spent time learning more about what had happened and, through service, was able to meet other kids who were going through the very same thing as she had.

I try as hard as I can to help these cancer patients the way that I couldn’t help Elena.

As I’ve helped more kids, I have found where my fallen pieces are supposed to go. As I go along, I grow my puzzle; it gets bigger every time a child takes a slice of my heart with them on their journey, and those pieces will never run out.

I think that what really makes the difference is that, at the end of the day, I can say to Elena that I am doing everything that I can to end the pain that she had to go through, and I can whisper up to her,” Don’t tell Mom and Dad but someone took a bit of the love you gave to me.”

To help continue Grace's mission in fighting pediatric brain cancer, please consider nominating someone for the "Best Sibling Ever" award: