Month: May 2018
Last trip to Memphis for my granddaughter’s treatment for leukemia at St. Jude’s Children’s Hospital. Rain is pelting the windshield, wipers fighting the force of water and wind then spots of no rain at all. It is a symbolic example of our three year journey coming to a close. We pull into the parking lot of the Tri-Delta House where we have a room reserved for us. We see new people and the familiar ones still fighting and hoping for a cure.
The next morning we arrive for the first of three MRI’s and labs, CAT scans and psychological testing that takes up the entire day. Tomorrow is full of appointments also. Humidity is heavy and it bears down on already stressed out emotions. Parents walk around downtrodden. Eyes vacant, trying to follow directions like good little boys and girls in hopes that a reward of a miracle of life will happen for their child. Robotic migrations from clinic to clinic carrying the all-important daily schedule that can change at any moment and invariably does. Waiting rooms are around every corner because that’s what you mainly do. They are filled with distractions for the child waiting for what they know will be the next painful procedure. Parents hate it too but there’s nothing left now except faith and hope and perseverance. It is an atmosphere of controlled chaos and a test of human endurance as to how many emotions you can shove down internally and keep from your frightened child moment by moment. Your own silent scream must remain that way until the end whatever that brings.
The lodgings are more than adequate. Living rooms, play and game rooms are adorned with beautiful furnishings, toys and up to date technology. Every wall has painted murals of landscape and animals that most of the children will not get to see, for real, for a long time. Some huge temporary houses like McDonald’s House have several big kitchens so you can make your own meals during the long term stays. The compound is gated and ran like a 4 star resort only what you are going to experience has nothing to do with pleasure and relaxation.
Staff does not build false hope even though it’s the only thread left in the fabric of your life to hold on too. You learn to build your own. This is a sub culture of desperation where everyone here belongs. The journey is like a train speeding toward a destination where every rider hopes they can eventually get off and get on with their lives. Some do but some are derailed along the way and never reach that station. This fact lives daily like a virus in each parent’s heart. None of this is St.Judes fault. They try very hard to accommodate but the situation is devastating and personal. It takes a very strong parent to endure and balance the medical control with their knowledge of what’s best for their individual child. Often you find yourself swinging from despair to anger.
We are grateful, relieved and blessed because we reached our train station as all the tests were negative and my granddaughter is cancer free. But, the fight continues there for so many. It is a journey that changes your Soul and lives within you forever. We believe in playing forward every life experience we learn from. My daughter met a grandmother this morning who has just arrived with her granddaughter and daughter. She is lost and she is desperate. My daughter gives her insights, navigation tools and when to take some advice with a grain of salt and which to pay attention too. She tells her the most important tool is research of everything, the drugs, procedures and advice. She has helped so many parents over these years cope during the worst journey of their lives.
My granddaughter started a website called “Freaking Out On Cancer” the first year of treatment. It is a place kids can talk about pain, victories, despair and joy. She intends to continue this website throughout her life. This journey into the valley of death was traumatic for our whole family but we made it through. Playing this experience forward is a way we can repay our incredible miracle. Each one teach one is the golden key of humanity.