Infant's cancer defies diagnosis
As three-month-old Jacqueline Carlson lies propped on a pillow watching her mom, her lips slowly form a tiny sweet smile.
Dressed in her little pink polka dot jacket, there is no obvious sign of the trauma the infant has endured or of the fist-sized tumor that was cut from her shoulder.
It's not apparent that the soft fuzz on Jacqueline's head is not an infant's normal hair but what has grown back since she lost her first hair to chemo. It takes a while to notice the tube that feeds nourishment directly into the baby's stomach.
It's hard to realize that Jacqueline's tiny body still harbors traces of a cancer that has so far defied identification by some of the premier oncologists in the country.
Jacqueline's parents grew up in Woodbury, Minn., and moved to New Richmond six years ago. Her mom, Tera, owns Sweet Pea's Floral in Woodbury, and her dad, Chad, works at Thrivent Financial in Hudson.
The baby is named for her maternal grandmother, Jackie Joyce, who died of metastasized lung cancer last June 20. Jackie died knowing another grandchild was on the way but not knowing it would be a girl.
Because Tera had some complications during the pregnancy with her older child, Tiegen, who is now 4, her obstetrician planned more periodic ultrasounds than would be usual.
Twenty weeks into this pregnancy, the ultrasound showed Tera was pregnant with a girl, but no problems were detected.
The 28-week ultrasound was also normal. But then things changed quickly.
"Right after that ultrasound, I started to get big fast," said Tera. "And I hurt. Everything hurt."
She and Chad half convinced themselves they'd been wrong about the due date and that the baby was farther along than they had thought.
Another ultrasound was scheduled at the 32-week mark.
"I was actually excited to have that," said Tera, who hoped to hear that she was near the end of term.
Trouble on the ultrasound
The reaction of the ultrasound technician watching the screen surprised the couple.
"I just remember the tech just looking and saying, 'This is interesting,'" said Tera. The technician called in a doctor.
"I heard the word, 'mass,'" said Tera, and her heart sank. After her mother's fital illness, the couple equated "mass" with "cancer."
But the doctor said it probably wasn't cancer on a baby.
That day, a Thursday, they were referred to Minnesota Perinatal Physicians clinic in Woodbury. But they couldn't get an appointment until Monday.
Tera describes that weekend in one word: "Hell."
"We told my dad and that was really hard," she said. "We didn't know what to say to people."
At the Monday appointment, a technician used a more advanced ultrasound machine and the picture was startling.
"I just remember you could see (the baby's) face and this big thing...," said Tera.
"Like a cauliflower," said Chad, finishing his wife's sentence. The growth was three-inches in diameter.
"It almost looked like another head," said Chad.
Also the baby wasn't moving as much as an infant at that stage should have. Tera was sent directly to Abbott Northwestern Hospital in Minneapolis, and Chad called his mother to pick up Tiegen and take him home with her.
Over the next couple of days, Tera had five more ultrasounds. The baby was moving more, so that lessened some of their worries, but Tera kept getting bigger.
Finally the doctor carefully drew out about a liter of amniotic fluid.
"I felt like the king of the world," said Tera of the immediate physical relief. "But within 24 hours (the fluid) came back - and more."
The plan had been to send Tera home, but early that Thursday morning, the doctors came to her hospital room and said they were going to do a Cesarean section.
The dilemma, said Chad, was weighing if it was better to let the infant go to term and avoid the preemie issues or to immediately do a C-section.
The doctors chose the second route because there was also fluid around the baby's lungs. Jacqueline was delivered on Nov. 1.
Chad said he heard his infant daughter squawk once and then go silent. She was put almost immediately on a ventilator.
With Tera still groggy from the anesthetic, Chad got his first look at the tumor on their daughter's shoulder.
"It looked like a ginormous blood blister," he said. "It was the size of a fist, a woman's fist."
As soon as they had the infant stabilized, doctors transferred her to Children's Hospital, connected by a tunnel to the birthing area of Abbott. Tera was discharged from Abbott on Sunday.
"Tera's tough," said Chad. "She was up walking like a day later (after the C-section)."
It was a 15-minute trip through the tunnel from Abbott to Children's. Both parents were glad when Tera was discharged and both could stay closer to their baby.
Search for a diagnosis
"A whole bunch of people kept coming in and looking at her," said Tera.
Jacqueline also suffered from hydrops, an accumulation of fluid around her lungs, but the lump was the major concern and a biopsy was done.
While the pathologist seemed uncertain, the initial diagnosis was neuroblastoma.
"The one doctor said the word 'cancer,' and that was the first time we heard 'cancer,'" said Tera.
Samples of the biopsy tissue were sent to specialists at Vanderbilt University Medical Center in Tennessee, Washington University in St. Louis, Mo., and Children's Hospital of Philadelphia.
The St. Louis specialist suggested the growth was a rhabdoid tumor.
Jacqueline's primary oncologist told Tera not to Google the term. So, of course, she did.
The search showed rhabdoid is "the most aggressive and fatal type of tumor a child can have," said Tera, "and I lost it."
Rhabdoid tumors are so rare there are no statistics for any types other than those that show up in kidneys, and the survival rate for kidney tumors in children is extremely low, said Chad. "It was very bleak news."
The skin on Jacqueline's tumor was fragile and leaked, so the doctors placed a dressing on it. When the bandage was removed, it was obvious the tumor had changed.
It had turned black and at the head was another growth, said Tera. "It changed fast on its own."
Doctors made the decision to immediately remove the tumor, cut as much as they could without damaging the infant's still-developing bones and send samples to more specialists, leaving a baseball-sized open wound.
The oncologist at Vanderbilt, whose specialty was inflammatory myofibroblastic tumors, suggested the cancer might be lymphoma, said Tera.
So samples were sent to specialists at Mayo Clinic, who ruled that out.
But, said the parents, those doctors found a gene mutation that's not present in rhabdoid tumors.
"Typically in oncology, it's black and white," said Tera.
"We've found a grey area," said Chad.
Still not having a definitive diagnosis, Jacqueline's doctors decided on chemo, starting one 21-day cycle with the plan of doing eight rounds.
"It was nasty stuff," said Chad. The baby was put on morphine for pain but still had seizures. Her diaper had to be changed frequently to keep the harsh chemicals off her skin.
Her parents watched on helplessly, often unable to touch their baby for fear of passing on germs.
Continuing with chemo seemed risky, especially with doctors unable to agree.
"I could see it in the two oncologists that we saw the most," said Chad. "I could tell that they didn't have the same opinion."
One wanted to continue with chemotherapy. The other thought the chemo was too rough on the infant and preferred a wait-and-see approach.
Radiation or more surgery are also possibilities, but if either damages the scapula, his daughter could lose her arm, said Chad.
"We didn't want to go through those drastic measures if we didn't need to," he said.
Without a firm diagnosis and with tests showing no further growth of the tumor in a month, the parents were inclined to wait. They expect that at some point radiation, more chemo or another surgery will be necessary.
But in the meantime, they are glad to see their baby looking well and brought her home Jan. 22.
"At one point we counted," said Tera. "She had 16 tubes or wires."
Now Jacqueline has only one tube, the feeding tube into her stomach. She is also on medication for nerve pain caused by the chemo and for acid reflux and is fed prescription formula.
"She does still throw up three to five times a day - significant amounts," said Tera.
But despite that, Jacqueline is growing well. She weighed 6 pounds, 4 ounces at birth and now weighs 9 pounds, 7 ounces.
"She's meeting most of her milestones," said Chad, adding that she is a little behind on motor skills. She smiles back at her family and coos.
"She burrows in under your chin," said Chad. Even though her parents couldn't hold her until she was 10 days old, she has bonded well.
Now an occupational therapist will be working with the baby, and she'll average two medical appointments a week. Jacqueline's next MRI is March 1, and the family will meet with her oncologist then.
But for all the Carlsons, life is settling down.
"For a long time we were in shock," said Tera, glad to have her family all under one roof.
"We've been told that we're doing amazingly well," said Chad.
When they brought Jacqueline home, someone suggested they must never have expected to see that day.
"We never, ever thought that," said Chad. "We always thought at some point she would be fine."
Tera agreed, "I remember saying it could be three months before we take her home -- we could be taking home a three-month-old baby. And we did."
Fundraiser is Feb. 17
A benefit for the family of Jacqueline Carlson will begin at 2 p.m. Sunday, Feb. 17, at Guardian Angels Church, Oakdale, Minn.
The baby's parents, Chad and Tera Carlson, were both raised in Woodbury, Minn., where Tera's dad, Kevin Joyce, and Chad's parents, Rex and Judy Carlson, still live.
The benefit will include food catered by Lake Elmo Inn. Tickets are $10 per person, can be purchased at the door and include one entry in a raffle. The price is $5 for children ages 6-12. Kids five and under are free.
There will be a raffle and silent auction. Food, beer, wine and soft drinks will be available.
Donations may also be sent to Anchor Bank, 1920 Donegal Drive, Woodbury, Minn. 55125. Make checks payable to "For the benefit of Jacqueline Carlson."
For more information, visit the CaringBridge site, "JacquelineCarlson."