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While other babies his age were enjoying tummy time and learning how to roll over, Blake Sharpin was fighting for his life. Here his mom, Salli, tells Blake’s story.
Blake was born in January 2006, and within a few weeks I could tell something wasn’t right. He was really constipated and sometimes he would scream uncontrollably for as long as 45 minutes at a time. I was exhausted and confused, and finally when Blake was 13 weeks old I brought him to the pediatrician’s office—not for a check-up, but for help. I knew this couldn’t be normal newborn stuff.
The doctor had me lie Blake down on his back and began to examine him. Right away I could tell he’d found something. He took my hand and told me to press on Blake’s tummy. I could feel a solid mass in there, and it was almost the size of a grapefruit. The doctor told us to go directly to Cincinnati Children’s, and on the way I called my husband. But I was crying so hard that I couldn’t tell him what was happening. My sister-in-law was with me, and she had to do it.
The hospital ran a lot of tests and by 9 o’clock that night, we were told that Blake likely had neuroblastoma, a rare form of cancer that forms in the body’s nerve tissue. I was furious with the doctors. I thought, “You’re wrong, my baby does not have cancer!” I just wanted to grab Blake and run. Cancer seemed like a death sentence to me. I was so scared.
Over the next few days, the medical team confirmed the diagnosis and determined that the cancer had spread past his midsection. This put the cancer at Stage III – the most serious is Stage IV. Thankfully, it hadn’t spread to his bones. The doctors developed a care plan, and shared it with my husband and me. They told us we’d start with chemotherapy to shrink the tumor, and then they’d do surgery to remove it.
But first we had to decide if Cincinnati Children’s was the best place for Blake — we would have taken him anywhere. My husband did a ton of research, and we learned that our team of doctors was one of the most experienced in the country for treating kids with neuroblastoma. So we decided to stay right where we were.
Blake’s primary oncologist was Dr. James Geller, and Drs. John Perentesis and Lars Wagner played a big part in his care, too. It didn’t take long for me to trust them completely. They were always honest with us, available to answer our questions, and able to anticipate how Blake would respond to treatment. Nothing surprised them, and nothing about Blake’s condition was unfamiliar to them. They knew exactly what they were doing, although of course there were no guarantees that our son would get better. Dr. Geller told us that if we had faith, we really needed to pray. And we did.
We stayed at the hospital for a month, until after Blake’s first chemo treatment. But before he could be discharged, I had to learn how to manage his central venous catheter, or C-line. This thin, flexible tube was inserted through the carotid artery in his neck and came out of his chest, near his heart. It had to stay in all the time so that he could receive chemotherapy, blood transfusions and medication. When our nurse educator told me I would have to administer his medication daily, flush out the C-line and use a needle to reinsert it, I just about passed out. But she was incredibly patient. I told her if she can teach me how to do the C-line, she can teach anybody. I got the hang of it.
We returned to Cincinnati Children’s every three weeks or so for more chemo. Blake seemed to do just fine – never really seemed sick, actually – but I struggled emotionally, especially at the beginning. Tom and I had to learn to rely on our family, our faith and the vast resources at Cincinnati Children’s to get us through. A social worker met with us regularly to talk about how we were doing. We could go down to the chapel any time to pray, and a minister would come at a moment’s notice if we needed encouragement or comfort. If I asked for a toy or a swing for Blake, boom — it was there, thanks to Child Life specialists, who do whatever is necessary to make children happy while hospitalized.
In November 2006, after eight rounds of chemo, the cancer team felt the time was right to operate. We were hopeful, but we were also holding our breath. When the nurse told me after surgery that the tumor was out, it was as if the door closed on neuroblastoma and the sunshine began to pour down on our family again.
Today, Blake is considered cancer free. We still go back to Cincinnati Children’s for check-ups, but you’d never know he had been so sick as a baby. I smile when I think about how I felt that first night on the oncology unit. Cincinnati Children’s isn’t a place of death at all — it’s full of life and hope, and exactly where we needed to be.
If you have had an experience with the Cancer & Blood Diseases Institute, we invite you to share your story.
Blake Sharpin, 4, was diagnosed with Stage III Neuroblastoma and is now cancer-free.
At Cincinnati Children's Hospital Medical Center, child life specialists are professionally trained and certified members of the health care team, with college degrees in child development, education, or therapeutic recreation.
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