Children and Health: Families across the country are caregivers for children with cancer and many other childhood diseases and illnesses. How can we support the sick children and their heroic parents?
So many families, so many people make their way quite ordinarily in the public world and then go home to face extraordinary circumstances. I'm interested in sharing those stories because they remind us we are not alone, there is help, and because seemingly normal human beings just down the street from you are performing superhuman feats every single day.
What if you took your child to the doctor because he had trouble sleeping and came out with a diagnosis of a rare cancer? As a parent there are few phrases a doctor can utter that would take the wind out of you faster.
It was that phrase that took the breath out of Cynthia and husband, Lou, on August 11, 2010.
Here's her description from her blog:
A mass was found at the base of his skull and Ty was later diagnosed with an extra renal rhabdoid tumor; a very rare and aggressive cancer. You may have heard us complain in the past about Ty's terrible sleep habits. When he was almost 3 he had yet to sleep through the night, but over the course of last summer it had gotten worse and he would sometimes complain about headaches. Everyone said we were crazy to subject him to an MRI just because he's a bad sleeper, but after several tough nights in a row we decided to take him into the emergency room and get some imaging done. The neurology team at Cohen's Children's Hospital told us it is highly unlikely that anything is going to turn up. He had extensive blood work done, he passed three neurological exams; he was a perfectly healthy active kid. We thought we would just walk out of the hospital looking like silly, worried parents, but at least we would have peace of mind. The first thing the neurologist said when she came back with the report was…'this is extremely rare and we certainly didn't expect this…'
Since then he has been through numerous life-threatening surgeries and is currently undergoing intense radiation treatment and chemotherapy.
It's a miracle he is alive
According to statistics and predictions and the realities of medical science, he should not be alive. But he is. And his parents want you to know all about him.
In her inspiring blog she calls SuperTy she chronicles the daily heartbreaks and inspirations of parenting a child with a life-threatening illness, who also has a spirit and determination to live that remains unbroken.
Here's her introduction:
On October 4, 2007, Ty Louis Campbell came into this world, and our lives changed forever — just like that. We never knew love like that before. Rocking him to sleep as an infant, we would think with horror about the first time he might scrape his knee on the sidewalk, eyes filling with tears over the thought that he should ever feel any pain. We just couldn't bear the thought of him ever getting hurt.
On August 11, 2010, our lives changed forever again. Ty was diagnosed with a tumor at the base of his skull; a rare cancer called Chordoma. Since then, we have been flooded with an incredible and powerful outpouring of love and concern for Ty and our family. We know our friends and family will be thinking of us often during the tough road ahead, and we appreciate it so very much. Of course, we want to keep everyone posted as things progress, which is why we decided to maintain a blog and to create a Facebook page as a means to keep everyone informed. Please feel free to post comments and reach out to us at any time.
He is our baby. Our beautiful, sweet, innocent, special baby boy. Please, please pray for him and keep him in your thoughts.
The family set up a Facebook Page to keep everyone posted. You'll see photos of Ty in various stages of treatment - and his signature smile.
Ty's parents are in and out of the hospital daily. Cindy has been generous enough to agree to share her story with us through her blog and through any conversations she and I can have in between Ty's intense radiation schedule. I am fascinated by her relationship to writing during this traumatic time so I asked her what writing almost daily does for her. She wrote back:
Writing to Heal
It is very therapeutic for me and I absolutely love writing about my baby boy's strength. It is a huge stress reliever for me, and I am passionate about trying to get more and more people in touch with Ty because I want him to have an impact. He is just so special. I say that partially because he is mine (of course) but also because what he has been through makes him amazing.
Ty and his family receive hundreds of loving comments and good wishes and their extraordinary story inspired a family friend Erica Schietinger to try to find a way to share it.
A family friend wrote this note, describing her dear friend's journey:
I have a friend whose little boy is fighting for his life - he has a very, very rare and usually terminal cancer. I say usually because by all counts he should have passed away at least twice now - hospice was called, Make-a-Wish done, heroic surgeries performed and the kid keeps beating the odds.
'Kid Keeps Beating the Odds'
He is headed into another surgery this week to again, save his life. His story began last August on a trip to the ER with his parents who were so sleep deprived. They couldn't understand why their child who was nearly three wouldn't sleep through the night. A CAT Scan later they were delivered every parent's worst nightmare that he had a large tumor on his brain stem.
They have fought for his survival every moment since in the most painful, roller coaster ride ever.
His mom, prior to retiring to be a full-time "cancer mom" was in PR. She derives her strength from other people, friends and strangers praying for Ty and sending her notes and messages- others are sort of propping her up as she lives in a chair in the PICU week after week with her main interpersonal contact Facebook.
She actually hopes to one day change careers and become a full time fund raiser for kids' pediatric cancer. So I'm writing to see if you think there is a home anywhere for Ty's story.
Here is the link to the blog - she is a wonderful writer.
Do You Know a Family With a Child With Cancer?
I hope there is room for Ty's story in all of our homes, and that we all find ways to lighten the load for our friends, neighbors and family members struggling quietly, heroically, every single day, to keep their children alive.