It’s been less than a week since we celebrated our victory in the Infiniti Coaches Charity Challenge. The project not only awarded The ChadTough Foundation with $100,000 for DIPG research, it spread awareness locally and nationally. The contest is what kick-started a group of advocates dubbed “ChadTough Champions,” which — now that voting has ceased — is chomping at the bit to get to work on the next project.
It’s awesome, but I admit it’s been short-lived. While we ride the momentum wave of that small victory for Diffuse Intrinsic Pontine Glioma, the ugly disease keeps right on devastating.
Just today I received a private message from a friend I went to high school with. When I glanced at the pop-up, I saw the words, “Chrissie, I can’t believe it …” and then saw “DIPG.” One of her students was just diagnosed. She’s eight.
How could this be? This “rare” disease has managed to touch my life in countless ways. It seems everywhere I turn, someone I know is learning that a loved one, neighbor, friend, classmate, or co-worker has been directly impacted by DIPG.
When I wrote about Dan Fife and Clarkston High School honoring The ChadTough Foundation, I was shocked to find out that three different children with DIPG were directly associated with the event. Dan’s sons — Dugan and Jeremy — are each close with a family that has lost a child to the disease, and Amy Quayle, a teacher at Clarkston and a ChadTough Champion, lost a niece to DIPG seven years ago.
How is this possible? It seems DIPG is suddenly everywhere even though it’s “rare.”
The Sad Reality of DIPG
We won the Infiniti Challenge and felt a fleeting moment of victory before it was ripped away by reality. Yes, we are making important progress, but we aren’t there yet.
Tammi and Jason Carr were prepared for a cancer diagnosis when they were at Mott Children’s Hospital in September of 2014. They could tell something was really wrong and got themselves mentally ready to hear the words.
Can hope be derived from all that is happening right now in the DIPG research community? … without a shadow of a doubt that the answer is yes. — from 3 Reasons You Should Fight for DIPG Research
They would fight it. They would deal with the chemotherapy, radiation, and ugliness that came with cancer. It wouldn’t be fun, but they could do it. Then they received the life-altering news that it wasn’t just cancer, it was DIPG. A diagnosis Tammi couldn’t even pronounce for a week after receiving it.
It robbed her family of the hope they had. Even with cancers that carry a dire 25-percent chance of survival, there is still hope. There is still room to carry determination to win a battle. When that chance is zero, that hope is erased. Determination transforms into helplessness.
The Brave Little Souls
There is a poem the Carr family included on the back of the program at Chad’s celebration of life service entitled, “The Brave Little Soul.”
Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world.
He approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?” God paused for a moment and replied, “Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” he asked.
God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.”
The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this – it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer – to unlock this love – to create this miracle for the good of all humanity.”
Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. “I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!”
God smiled and said, “You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you.” God and the brave soul shared a smile, and then embraced.
In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.” Thus at that moment the brave little soul was born into the world, and through his suffering and God’s strength, he unlocked the goodness and love in people’s hearts.
For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.
The most difficult part of this fight against DIPG is that there are so many brave little souls who will be lost in the process. Just as the poem says, there will be plenty of good to come from these children, but we would rather not have to say goodbye.
I have spoken to many families who have lost their children to DIPG. Their children share so many of the same characteristics: they are kind, brave, strong, determined, and wise beyond their years. So many of these children comfort their parents through the hard times. It’s as though every story I hear makes “The Brave Little Soul” more and more real to me.
The Brave, Brave Parents
DIPG parents are some of the strongest, most courageous and selfless people I have ever had the honor of speaking with. They have allowed their children to participate in trials to contribute toward finding a cure. They donate their child’s tumor for research. They hold fundraising events and awareness rallies. They are driven to honor their children, but all say with such passion that they never want another parent to go through the hell they’ve endured.
Winning the battle against DIPG won’t happen overnight. No one is going to catch lightning in a bottle. It’s going to take perseverance, hard work, and prayer. Research will lead to progress before the big win, like finding treatment options that prolong life. That is the science behind it.
But let me tell you why these parents are fighting for awareness. You might think awareness is nothing more than lip service, but it carries so much weight. So many of these brave parents have been written off in hospitals because they carry the DIPG diagnosis. They aren’t presented with treatment options for common illnesses because they are slapped with the DIPG label.
It’s not okay.
These brave parents are raising awareness to fight that stigma and encourage young doctors and researchers to challenge DIPG all while they are bringing in money to fund the process. We can help by supporting those parents with our time, money, or spreading of the word.
Really, that’s all it takes. Instead of shaking your head or turning from the sadness, embrace the cause and contribute to the cure.
It’s what these brave little souls are still fighting for.