When Rachel Lembeck’s third birthday comes around later this month, she’ll have a party with some friends. Otherwise, she has nothing too extraordinary planned.
She’s been there and done all that already.
All smiles and curls and purple “Frozen” princess socks on her feet as she welcomes a visitor to her family’s Dunwoody home, Rachel doesn’t exactly look like “the ultimate fighter” her mother describes. Even when she gives a tiny thumbs-up — using the left arm that might well have been amputated had things turned out differently — it’s utterly adorable.
It’s also something of a miracle, in every sense of the word.
“Every piece of the puzzle, if one piece was off, she wouldn’t be here,” Alyson Lembeck, 39, said of her youngest child. “It’s really a very special story in that way.”
At its core, it's a story about faith and love and two people's refusal to take no for an answer when things seemed bleakest. And the willingness of those same two busy people — Rachel's parents — to go back and talk about a frightening time if it will help others feel less alone.
“I feel like I’ve been given a gift and I should share it,” said Alyson, a family law attorney at Ellis Funk. With her husband, Gabe, she’d just spent nearly two hours discussing the crisis that began during a seemingly routine ultrasound three years ago this month.
An uncommon situation
Medically speaking, it’s the story of a newborn with infantile fibrosarcoma. A cancer of the soft tissue, it’s so fast-growing that when the doctors at Northside Hospital performed an emergency C-section, a lemon-sized tumor had pushed through the skin and now also covered much of 6-pound, 3-ounce baby Rachel’s forearm.
And it’s so rarely seen, even the cancer experts sat up and took note.
“It’s not something that is incredibly common,” said Dr. Karen Wasilewski, the oncologist at the Aflac Cancer Center of Children’s Healthcare of Atlanta who oversaw Rachel’s diagnosis and treatment. “We’re one of the largest pediatric cancer programs in the country, and we see one of these every couple of years.”
Rachel’s father recalls it being “like medical school was in session” at the Neonatal Intensive Care Unit at Scottish Rite of CHOA.
“Every doctor and nurse along the hallway was like, ‘I’ve never seen anything like this,’” said Gabe Lembeck, 40, a senior investment analyst at Balentine. “They would come to change her bandage in the NICU and people would gather from everywhere.”
In part that had to do with the drama surrounding the birth. When the C-section was performed on Alyson, who was 36 weeks pregnant, her uterus was filled with blood — a result of Rachel’s tumor having burst. His daughter was “white like I’d never seen a human being” from blood loss, Gabe said; doctors began pushing blood back in through the umbilical cord and spent the next several hours getting it to clot.
Next came an agonizing 10-day wait for tests to confirm a suspected diagnosis of infantile fibrosarcoma. Then, six rounds of chemotherapy over approximately four months to shrink the tumor sufficiently for Dr. Josh Ratner, a CHOA pediatric orthopedic hand surgeon, to go into Rachel’s tiny arm and try to remove it.
Amputating from the elbow would have essentially provided a cure. But that wasn't an option as far as the Lembecks were concerned (Alyson: "There was not a question in my mind that we were saving her arm"). Meanwhile, infantile fibrosarcoma is "so responsive to chemotherapy," Wasilewski says, that amputation is no longer the standard recommended care option.
The power of faith
But Rachel was only 10 days old. And more life-threatening drama loomed. During the first chemo treatment, the tumor unexpectedly shrank so much, so quickly, that blood again came pouring out of her tiny body and her veins began shutting down. As doctors struggled to keep the “ultimate fighter” from bleeding out, others tried to prepare her parents for the worst.
"This one nurse came in and Alyson said, 'Is she going to make it?'" Gabe recalled. "And she said, 'There's always a chance. Miracles do happen.'"
It was Alyson who urged doctors to again try what had worked once before: pushing blood back in through the umbilical cord. Success. Rachel’s parents were relieved and ecstatic — but perhaps not quite so surprised as all the medical experts who’d cautioned them that most babies’ umbilical cords shut down by the time they’re 3 days old.
"Somehow, we were like, 'It's going to be OK,'" Gabe recalled. "'I know it's going to be OK.'"
“We had our prayer books and we were looking at each other and we were like, ‘This is going to work,’” Alyson agreed. “I don’t know if it’s just denial, or what … .”
Maybe it was, a bit. But this seems as much a case of cancer simply being no match for the human spirit in the end. And the power of faith asserting itself. During everything they went through for nearly seven months — including the arm surgery, which might still have resulted in an amputation had it not been successful, then two more rounds of chemotherapy — Alyson and Gabe say they were sustained by their Jewish faith. At Dunwoody's Congregation Ariel and beyond, their religious community drew close around them, praying for Rachel and even taking shifts with her at the hospital.
And God, they say, never let them or Rachel out of his sight. Quite the opposite, in fact.
“Even when the worst news was coming out, even when doctors were telling us that they’d have to cut her arm off because there’d be no other way, I just had this burning feeling inside,” Alyson said, “that God was with us and it would all be OK.”
"We were always faithful, but when you got through something like this, it's like you feel it," Gabe said. "It's hard to explain. It's like it's with you on another level now."
‘An inspiration to other people’
They feel grateful for how things have turned out. And so they give back. Alyson advises other families on an infantile fibrosarcoma Facebook page and is becoming more involved in charities such as Cure Childhood Cancer. Equally important, she and Gabe talk about their experience. To help buck people up emotionally as they go through medical challenges of their own. But also to stiffen their backbones a bit.
"We were that patient," Gabe said wryly in recounting how they reached out to other doctors and experts in approximately 10 states while trying to decide how long to continue Rachel's chemo treatments before attempting that make-or-break surgery.
"We think it's important for people out there to know that they need to be an advocate for their child and their medical needs," Alyson said. "And to give people hope that miracles do happen.
“You might be going through really hard times and you don’t know why,” she continued. “But when you get through them on the other side, you’re better for it. I feel like she’s just an inspiration to other people.”
Just then, that “inspiration” could be heard erupting in giggles in another room with her brothers, Micah, who just turned 8, and 4-year-old Noah. Several times over the course of that lengthy interview, Gabe or Alyson paused to call out “Play nice!” or “It’s his turn to choose,” then turned back and apologized for the interruption. But it was just the normal soundtrack of a home filled with healthy, active children. Which made it sound that much sweeter in this case.
Rachel now gets scans every six months and has almost full function in her arm and hand (her parents suspect she might be left-handed). Once again, the experts have had to sit up and take note.
“Dr. Ratner says her hand is moving in ways it shouldn’t,” Alyson said of the surgery to remove the tumor inside the arm, which also necessitated taking out the tendon that controlled her thumb.
“A baby that has an injury can retrain the (remaining) tendons to do something different,” Gabe added. “It compensates.”
And how. If there's a tendon that spreads joy, it seems to be working overtime in Rachel. Terrible Twos? Never happened, her parents say. She loves princesses, music and dancing, and playing with her brothers. She's extremely sociable, even with newcomers — a vestige, perhaps, of so much time spent in hospitals. When she climbs on her father's lap and sings "Itsy Bitsy Spider," she shyly moves her arms along in time with the tune. Both arms.
“She’s just a happy spirit,” Alyson says. “I don’t know what’s ahead of her, but I know she’s always going to be something touching and moving to a lot of people’s lives.”
