Baby Touched Many In Short Life
Greyson Kapes was a miracle, said his mother, Amanda Kapes.
Born by emergency C-section on Jan. 5, the preemie battled against all odds.
Not only did he have a congenital heart defect that would require open heart surgery, he had leukemia and Down syndrome.
He would face more setbacks in the first weeks of his life but surprised doctors by overcoming early obstacles they didn’t expect he’d survive.
Sadly, Greyson passed away April 4.
“Just because God ultimately called Greyson home does not mean he wasn’t a miracle. He calls us all eventually,” said Amanda, of Drums.
Amanda agreed to share her memories of Greyson, she said, because Greyson was a “very special little boy.”
“I will do anything to keep his memory alive,” she said.
‘Pray for Greyson’
Greyson weighed 2 pounds, 9 ounces when he was born. Soon after his birth, doctors discovered that his white blood cell count was more than 10 times higher than normal.
Subsequent tests revealed that Greyson had transient myeloproliferative disorder, a form of life-threatening leukemia found in infants with Down syndrome. The overabundance of cells caused liver damage and blood clots in his heart and liver. He was immediately flown to the Children’s Hospital of Philadelphia for chemotherapy and other treatments.
He’d remain in the hospital’s care until his passing.
During his stay, Amanda and her mother Ann Cwalina maintained the “Pray for Greyson K” Facebook account. On it, they detailed Greyson’s progress and asked for prayers.
“Several thousand watched updates day in and day out, viewed pictures and videos within the confines of social media. The best of the best doctors in the country, from every specialty under the sun made their regular rounds,” Amanda said. “His family desperately soaked up every moment at his bedside, in an effort to make the best memories with him as they could, despite the slew of tubes and wires covering most of his tiny body.
“Who knew Greyson? The truth of the matter is — no one truly knew Greyson. Not even me.”
Asked whether Greyson had developed a personality, or had moments where his eyes would light up, Amanda said, “To be honest, I don’t know many of the answers to ordinary questions about a baby.”
“Greyson was far from ordinary. I am not sure if Greyson ever genuinely smiled. We have some photos and videos where we like to believe he is,” she said. “His facial features were very animated when he was awake. He had the biggest, brightest dark brown eyes that always wandered up and to the sides as if to say, ‘What is all this stuff?’ and your heart would melt instantly. On good days, Greyson spent some lengthy periods of alertness just gazing about, sucking on a milk-dipped Q-tip while we talked to him. He was always very responsive to voices so we made sure we talked, sang, read and prayed with him frequently.”
There’s one thing Amanda said she knows with certainty.
“My boy had an unyielding fight and a will to live, which makes his passing all the more gut-wrenching. In a little over 12 weeks of life, Greyson faced and conquered several life-threatening obstacles of which he was not medically expected to survive. They included prematurity, myeloproliferative leukemia, septic shock from a blood stream infection, a massive blood clot in his heart, enterococcus peritonitis, a bowel obstruction, heart failure, kidney failure, critically high potassium levels, critically low potassium levels and three code events (two of them he sustained as a DNR (do not resuscitate) status).”
Cwalina noted that her grandson’s medical team was impacted as he grew more ill and eventually passed. Nurses cried and doctors choked back tears.
“They each told us separately, simply and quite emotionally, ‘Greyson changed us.’ We knew exactly what they meant because we felt it too,” she said.
“Many people may say Greyson was not healed, but that is not true. While Greyson was not healed in his physical body, he is fully and wholly healed right now in timeless eternity. He is waiting for us and we believe that the love of Christ is so lavish that He will send Greyson ahead to welcome us when it is our time.”
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