Emily was weak from being in a medically induced coma for two weeks and couldn’t sit up or hold her head up on her own for very long. I wasn’t complaining at all, though. The fact that she was alive was a miracle, delivered to us directly by the incredible doctors and staff at CHOP, the prayers and support of our amazing family, the little boy in the elevator, and by the thousands of people all around the world. When I posted “I believe,” I was believing in all of that, of course, but also in the remarkable strength and tenacity of our little girl. Everyone was certain she would not make it through the night when Dr. Berg drew the line with his foot on the PICU floor and said she had already crossed over it. We had called in our families to say goodbye, and she was still here. We’d gotten through the hardest part, but we had yet to see if the CAR T cells had killed the cancer cells.
Emily is getting a little stronger each day. She’s able to support herself a little more when she sits up. Doctors completely stopped one of the sedation meds she’s been on, but she had withdrawal symptoms all day, throwing up and just not feeling well. She was able to talk better today—her voice was a little stronger. Tomorrow (when they will examine her bone marrow for cancer) is a very, very big day. It’s hard to get my hopes up after we’ve had our hopes up so many times before only to receive bad news. However I feel like there has to be a reason she made it through the night when the doctors said she wouldn’t. There has to be a reason that the steroids never killed the T cells when the doctors were so certain that they would. We’ve heard from the doctors that there isn’t any medical explanation for some of the things that happened. We Believe!
—Kari’s journal
May 9, 2012
Besides Emily’s bone marrow aspiration, the doctors had also ordered a CT scan because a few weeks earlier, they’d noticed a nodule on one of her kidneys and they wanted to make sure it hadn’t grown. After Emily’s bone marrow aspiration, I went with her into the CT scan room so I could be with her as she got her scan. Kari was in a waiting room across the hall. My eyes were on Emily, but my mind was worrying about the bone marrow results, which the doctors promised they would get to us as soon as they knew.
The scan takes about twenty minutes. Emily was starting to emerge from the tube when my phone rang. I saw it was Dr. Grupp!
“Hello?” I said, my heart pounding.
“Tom, this is Steve Grupp,” he said. “I’m in New Orleans at a conference, but I wanted to be the one to tell you. It worked. Her bone marrow shows no sign of disease. There is no leukemia. Emily is cancer free!”
From the waiting room, Kari watched me walk into the hall and I could see her face stricken with worry.
“What’s wrong?” she asked, slowly walking toward me.
“The T cells worked!” I said.
“It worked?” she gasped.
“She’s cancer free,” I said in a broken voice as I started crying.
She ran to me and I hugged her tightly in my arms. It had happened. Our prayers were answered. We had finally received the news we had been waiting for. The whispers had guided us to this miracle. As I held Kari, both of us sobbing in the hospital hallway, as we had so many times in the past two years, I felt a huge weight lifted, as if the elephant that had been sitting on me had just stood up. From the beginning I’d told Emily she would get better, she’d believed me, and it had finally happened. Our family made it.
I called my parents and Kari called hers to start the family grapevines going. By the time Emily was out of the procedure and back in her hospital room, our phones were ringing, but we didn’t answer. We knew we had to post an update to Emily’s supporters. There was so much to say, but for now a brief post was all we needed.
No cancer cells! T cells worked!!!!
—Kari’s journal
May 10, 2012
In the days after Kari posted that Emily was cancer free, we experienced how much the world had been praying for our girl. Hundreds of messages of celebration came shortly after we posted the message that Emily was cancer free.
Wow, I’m sitting here just speechless, wondering what to say that can sum up everything in one word. The only thing I can come up with is BELIEVE.
—Christina Daniko
YAAY! This brought great tears to my eyes and my heart overwhelmed with so much joy and happiness!! God has really blessed Emily, she is a true miracle! What a trooper Em… We love you!
—Keena Lorrine Wilson
I just burst into tears.… Thank you Lord for answering so many prayers.… We have witnessed a miracle, albeit via Facebook. Congratulations to the entire family.… Emily you are such an inspiration, am sure your journey will help so many other people. Keep fighting girl!
—Ellie Helen Fulkerson
Praise God!
—Kathy Coursen
Amen!
—Lori Orndorff
AMEN!!!!! WE BELIEVE!!!
—Bernie Strong
The doctors continued to test Emily’s bone marrow via several tests, trying as hard as they could to find the tiniest sign that there was still cancer there, but they could not find one cancer cell.
We had asked the world for prayers and it had come through stronger than anyone could have imagined. As the word spread through
