If Jace is one to “talk your head off,” in his mom’s words, there is reason to smile about it.
If he gets up to monkey business in the house, well, said his dad, “Sometimes you wanna say, hey dude, get off the back of the couch. And then you’re impressed he got up there.”
That Jace is a typical 6 year old is to be embraced, because it wasn’t always expected.
When he was around 6 months old, a baffling series of sudden changes landed him in the hospital. “We went from a healthy baby to an ICU baby in a couple of months,” said his mom. At worst, his life was at stake; at best, his mobility was in question. When he became a patient at St. Jude Children’s Research Hospital, an interdisciplinary team came together to preserve both his life and his quality of life, and soon, Jace began taking literal baby steps toward life after cancer.
In 2016, Jace had a 5-inch tumor in his spinal cord. In 2020, he took 30 unassisted steps. In between has been hard work, incremental improvement, and, in his mom’s words, “a miracle of God and science.”
Signs of trouble
The first odd thing wasn’t all that odd. Four-month-old Jace just seemed a little constipated. When he went a whole weekend in January without a bowel movement, his mom, Jamie, took him to the emergency room, where they were less concerned about his constipation than they were his scoliosis.
Quite suddenly, Jace was displaying a 44-degree curve to his spine.
“I mean, he looked like a C,” said Jamie. “He wasn’t crooked, and then all of a sudden he was. The doctors just told us that we didn’t see it because we saw him regularly, but even looking back at pictures, it was all of a sudden he got kinked.”
Then came the screaming. Day and night. Jace could only sleep in the baby bouncer under a vibrating pillow, “if you can say sleep,” said Jimmy, his dad. “He would just grunt, constantly move around, wake up, scream. I remember we were in a restaurant once, and the whole restaurant just stopped and looked at us, like, what did you just do to your child?”
The doctors said scoliosis shouldn’t cause such pain. And there was more: his legs were turning purple off and on, his feet were always cold – “it didn’t matter if they were under twenty blankets,” said Jamie. Everyone was increasingly concerned, but there was some kind of hold up with getting an MRI.
Finally, in March 2016: scan day. It took four hours. “I knew something was weird, that it took so long,” remembered Jamie. “When we go to leave, the nurse says she needs to talk to me — well, that’s probably not good news. And she told me he had a tumor. It took a couple times of her saying ‘in his spinal cord’ for me to realize she meant IN his spinal cord. I didn’t understand that a tumor could be in your spinal cord.”
The tumor stretched from T1, the first thoracic vertebra, to T11, the next to last. On a little baby, this is about 5 inches long.
Jace was sent home with his parents, to return for an appointment the following week. “That night, when I was trying to nurse him, he wasn’t moving towards me,” said Jamie. “I started remembering after the MRI, he looked so long. I even commented on it — God, he looks so long! And I realized that he was limp. He hadn’t used his legs since the MRI. So I called the hospital the next day and was like, is it normal for a baby to not use his legs the day after anesthesia? I felt stupid for doing that…I mean, even my pediatrician’s office, when I would walk in, would give me this look like, there she is again. So finally I called my dad who told me, no, you need to go to the ER.” It was too windy that day for an airlift, so an ambulance transported Jace, now partially paralyzed, for emergency surgery.
“He didn’t talk. He wasn’t hitting milestones, just because of the immense trauma your body goes through in a situation like that. So he did speech therapy, because at that point, babies should be babbling, or cooing. He had just started making those kinds of sounds before he had the surgery, and after the surgery he didn’t make any noises for a while. So we were trying to get sign language for communication. Here he is signing for more bubbles in speech therapy.
Once he finally did start making some progress verbally, he exponentially grew at that point. He loved his speech therapist SO MUCH. And she loved him. She would up his goals every single time they would have a session, and he would meet them - and she would up them again, and he would meet them! And finally she was like, ‘I have tried to keep him as long as I could, but he’s met all of his goals – he’s doing great.’” – Jamie, Jace’s mom
Heartbreak to hope
It took a while for their hearts to really accept the truth of the ranks they’d joined. Even when they arrived at St. Jude with Jace, and Jimmy went down to breakfast that first morning, he came back and said to Jamie, “It’s going to break your heart, all those little kids with cancer.” It finally hit home the afternoon Jamie asked Jimmy to buy a lint roller, because all the thick dark hair Jace had been born with was falling out all over everything.
Jace was one of those little kids who’ll break your heart. Jimmy and Jamie were cancer parents now.
Before they arrived at St. Jude, Jimmy and Jamie had been warned Jace might never walk. Even if he regained use of his legs, they were told, the radiation to his spine would stunt its growth, while the rest of his body grew. But at St. Jude, doctors made a new diagnosis of anaplastic astrocytoma, and believed it could be treated without radiation therapy. At 7 months old, Jace began what would be a year of chemotherapy and countless hours spent with St. Jude’s physical, occupational and speech therapists, who were determined to help him along.
As Jace gained strength, his physical progress was amazing. First, he started Army-crawling everywhere, dragging his legs behind him, “so I just had to keep my floors really clean,” said Jamie. Then, physical therapy gave him a scooter board, and when he discovered how fast he could go, there was no stopping him. Then one day, he pulled his legs up under him, and crawled a couple paces. “Then we had to keep his central lines pulled up so they wouldn’t get pulled out as he went.”
St. Jude supplied him with his “first set of wheels,” a standing wheelchair, which he loved. Next, he started to walk with a front walker, “so he looked like the old man in Up.” His grandpa, using a walker from recent knee surgery, would race him down the hall. His sister, Joy, would make up games to challenge him. Then he was on to a rear walker, then a pair of forearm crutches. Then one crutch, so he had a hand free to carry a toy.
“St. Jude got him his first set of wheels. We went to therapy when they arrived, and the wheelchair manufacturing guy was there, and his therapist. We got him hooked up, and he touched the wheel, and he wiggled it, and it moved, and then he wiggled it some more, and it moved some more. And he just started going. There was no stopping him after that. Any hill that he saw, he went directly for the hill – no fear, no brakes. That was my worst fear for a while.” – Jamie, Jace’s mom
In the beginning, Jimmy’s mind had not gone to losing Jace; it had gone to what Jace stood to lose. And he believed that would be the kind of childhood Jimmy himself had enjoyed. He determined to look into wheelchair sports, to get a truck with a wheelchair lift, anything and everything he could do to keep Jace off the sidelines of life.
Now, when they return to St. Jude for checkups, Jimmy gets to watch Jace walk through the doors of the place that made all the difference. “Going from thinking my son’s not going to be able to live a life like I did, to seeing him swimming, walking with his sticks, smiling ear to ear — it is amazing,” he said, “and we’re so thankful to St. Jude for that.”
There is every hope that Jace, with continued therapy and practice, will continue his progress.
Once upon a time, Jace’s parents were hopeful he would “catch up.” Now, they’re hoping they can keep up.