September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer. Stories are always more potent than statistics.
By Jessica Gerber
You never forget the first time you see your child. You look into his or her eyes and anything seems possible. At that moment, the last thing you are thinking of is the possibility that you will experience seeing your child for the last time. But each day, too many families are faced with saying goodbye to a child after weeks, months or years of suffering.
It needs to stop.
Teddy was a beautiful, beautiful boy, with dark (“mysterious” we called them jokingly) brown eyes, and full, red lips. He was solemn as a baby and toddler, always watching the world around him, taking it all in, figuring it all out. He loved books – both being read to and looking at books by himself. He was the middle child, with an older brother (whom he adored) and a younger sister (whom he loved as much as he teased).
Summer 2009 was not particularly noteworthy. Assorted day camps. A trip to Great Adventure (where Teddy, after talking a big game, chickened out from riding the rollercoasters). Our annual two weeks to Block Island, where we went to the beach, hiked, ate seafood, collected shells and seaglass. A trip to Fenway Park, where Big Papi hit a game-winning homerun.
School started – 3rd grade for Teddy – and two days in he got a fever. Since his brother had just gotten over one, we weren’t concerned. Then a week later he got another fever, and then another two weeks after that. Blood tests showed nothing. Over the next couple of weeks his appetite dissipated and he got tired easily. He seemed blah.
Was he being bullied? Was he depressed? We couldn’t get any answers. He threw up at school on a Friday morning and we took him back to the pediatrician. His liver seemed enlarged so we were sent to get an ultrasound. The ultrasound found fluid in his chest so we went to get another ultrasound, and then went to the ER. We kept descending deeper into a nightmarish circle of doctors, tests and inconclusive answers until three days later, when the PICU doctor walked me into a windowless room, sat me down and matter of factly said, “Your son has a tumor the size of a man’s fist growing in his chest.”
After that moment, everything took on a surreal aspect. Against my better judgment, I Googled “undifferentiated sarcoma” and saw nothing hopeful. First came chemo, which Teddy had a horrible reaction to, becoming delirious to the point that the doctors did a CT scan to make sure he hadn’t suffered some sort of brain damage. The chemo was tweaked, and other, equally toxic meds were added to counteract the negative effects. Teddy’s urine turned blue. One time he peed on my foot and my skin was burned because the urine was so toxic. He threw up, lost his hair, and his white blood cell counts plummeted. Every elevated temperature warranted a trip to the ER.
Then came the surgery. After traveling from one hospital to another, looking for ANY doctor willing to operate, we found a surgeon who said “yes.” One operation that lasted 9-10 hours. A week later, “only” open heart surgery that lasted 4 hours. Miraculously speedy recovery. Home. Hope.
Then radiation. Proton beam radiation was recommended because of the type and location of Teddy’s tumors. Even though there had been a total resection we knew cells remained. The closest proton treatment center was in Boston, 3-4 hours away. We lucked into a condo nearby, thanks to family friends, and spent hours tooling up and down the Mass Pike. When the rest of our family could come stay with us, they did.
Less than four weeks after Teddy finished his radiation we got unfathomable news. Multiple new tumors appeared on scans. We tried different chemo drugs, more radiation, and looked for miracles. Nothing worked. Days at the hospital turned into weeks, which turned into months. Teddy couldn’t eat, couldn’t drink, and even had to spit out his saliva because it hurt too much to swallow. Pain meds caused complications. The meds designed to help the complications caused complications of their own.
Throughout it all, Teddy stayed strong and hopeful. We watched World Cup soccer on TV and talked about how he would play soccer again with his travel team. We planned vacations. Even though he hadn’t eaten in weeks, he wrote up shopping lists for food that he hoped to eat. We read books – Harry Potter and the 39 Clues books. The next installment of 39 Clues was slated to come out in September – we circled the date on our calendar. We watched DVDs of “The Simpsons” and “Lost.” We played Xbox and Wii.
But all the planning and hoping in the world can’t fight a disease for which there is no cure. Undifferentiated sarcoma is so rare that none of Teddy’s doctors had ever dealt with it before. The new, targeted chemo drugs that might have helped him were inaccessible to us. And every day we watched our beautiful baby boy become weaker, sicker, and less hopeful.
Teddy came home for two weeks, but it wasn’t what we’d hoped his homecoming would be. He couldn’t stand, he still couldn’t eat or drink. We spent hours each day back at the hospital getting transfusions. A fever brought him back to the hospital in-patient, and things started to fall apart. Scans showed more tumor growth. His breathing became labored, so he needed oxygen. He was transferred from oncology to the PICU. We had meetings with doctors that no parents should have – discussing end of life decisions, organ donation. Teddy spent less time awake.
On Sunday, August 15, I left the hospital to go home with Teddy’s brother and sister. I said, “goodbye, I love you, I’ll see you soon,” and then tickled Teddy’s face with my hair. He closed his eyes and smiled.
My husband called me at home and woke me up. “Come here now,” was all I needed to hear. As I drove up the highway I kept thinking “it’s going to be OK, it’s going to be OK.” I arrived at the hospital at 1:45AM, August 16, 2010, and walked through the quiet hallways, continuing my mantra. I made my way through the PICU and ran into the attending doctor. He touched my arm and said, “I’m so sorry, your son died 10 minutes ago.”
I walked into the room and saw Teddy lying in his bed. And I knew the doctor was right. He wasn’t sleeping. He was gone. I would never read a book to him, or hold him or tell him I loved him.
How is that right? How should a 9 year-old boy, full of promise, love, intelligence and hope, not see his 10th birthday? How can his family face a lifetime of missing an irreplaceable piece of itself? So many birthdays, holidays, first days of school, which, even as we celebrate, we feel the emptiness and loss.
No child should lose a sibling. No parent should lose a child. And no child should have his or her future stolen by cancer.
Filed under: Childhood Cancer Stories 2014