We are childhood cancer parents, and we are not ok and we are very tired.
As childhood cancer parents, we receive many labels. Oh, how strong you are!! Oh, the ability to do hard stuff! Your family is so strong! Keep up the fight! I don’t know how you do it. I couldn’t imagine what you are going through.
Guess what? We are tired. We are weak. We are terrified. We don’t know how we do it. We don’t plan for the future like normal families, but we plan for the next treatment, the next hospital visit. We make bucket lists for them, seriously NO parent should be required to make a bucket list for their child, but we do so we can give them all that we have. We pull those 2nd, 3rd mortgages, empty the 401k and retirement plans, all in the hopes of giving them their life back.
We wear T-shirts with our kids names on them, and call them fighters and warriors. As ”cancer parents”, we have to pump our children full of toxic medicine, catch their puke in buckets, hold them down for pokes and dressing changes, send them off to surgery, just to cry in the corner of the waiting room.
We catch the wrath of all the anger they have, all of their frustration is pointed to us most days, and it’s the hardest thing to hear your child scream at you to stop and say they hate you for making them do this. We spend days, nights, weeks, months in the hospital, sleeping next to their beds in cots, or blue chairs that are so uncomfortable, surfing the web for success stories when we just can’t sleep, because we know that the nurse is coming in soon, or their results will be posted, and the beeping of their monitor, watching every single heart beat on that screen. This is our new normal from diagnosis day forward.
And God knows if we step out of the room for 10 minutes the guilt of leaving your child alone haunts you. We skip meals, showers, the list goes on. We never get a full night’s sleep. Ever. The guilt we feel for our other children having to watch their sister or brother go through all they do. It never ends. You make special trips just for their siblings to try and bring “normal“ back to them, but it will never be pre diagnosis normal ever again.
So, we aren’t strong. We are weathered. Beaten against the jagged, rocky edges of childhood cancer. We stand up each time, go at it again, because that it is what we do. We have to. And you can be absolutely sure, we don’t want you to imagine our lives, or put yourself in our shoes. It’s not something we want for any of you. We just want cures, and research, and treatments that give our children 100% chance to be adults and live their lives the way it’s supposed to be.
Instead of pulling them in little red wagons through the hospital halls. We should be going to the park, planning for them to attend preschool, signing them up for soccer or T-ball or gymnastics.
We want the world to pause, just for a moment, and acknowledge that we can do more for kids with cancer.
Then, maybe someday, we will only need little red wagons for beautiful, cancer free strolls to the swing sets of the world.
But rest assured, we are just like you in every way except for one, we are the parents of a child with cancer/terminal cancer and our only goal is to give our child, our family a chance at a normal life.
(Dad to Mackenzie, diagnosed with DIPG at 3 yrs old)
Mackenzie was diagnosed at 3 years old with an inoperable, incurable brain tumor called DIPG. This week we will be sharing the perspectives of her mom, dad, brother and sister as they move through the fears and unknown of terminal childhood cancer.
*** THROUGH MY EYES: THIS IS CHILDHOOD CANCER SERIES