Correction: Girl-Major Brain Surgery story
GILLETTE, Wyo. (AP) — In the headline of a story Oct. 24 about a girl who underwent brain surgery, The Associated Press reported erroneously the girl’s age. Caty Emmons is 9-years-old, not 7.
A corrected version of the story is below:
Major brain surgery can’t keep 9-year-old girl’s spirit down
Caty Emmons has flown on an airplane twice
By PATRICK FILBIN
Gillette News Record
GILLETTE, Wyo. (AP) — Caty Emmons has flown on an airplane twice.
The first time was two years ago. She was flying from Warsaw, Poland, with her then-7-year-old twin sister and 5-year-old sister to the United States to live with their adopted family in Broadus, Montana.
She doesn’t remember much from that flight. On a recent Tuesday morning at the Gillette-Campbell County Airport, she twirled and skipped around saying how much she was excited to be on an airplane again.
“We’re going up, up, up in an airplane,” Caty shouted.
This flight would be different for several reasons. One was because Caty would be flying in a six-seat plane wearing a headset and taking direction from Mike Gray, a pilot for Pilots for Christ. Another was she was traveling from Gillette to Denver, only a 90-minute flight.
She could sit shotgun, doodle in her coloring book and look out the window at the mountains and plains 10,000 feet below. It was a chance for an exciting adventure on a school day in October.
For her mom Kimber, it was a different adventure.
“With what we could be facing and what we already have .” she said. “I am petrified.”
Earlier this week, Kimber’s youngest son Cale, 11, pestered her with questions. When will you be back? When is Caty coming home? Is she staying in Denver? Are you staying with her?
“Everything he has experienced as a little brother is coming back to him,” Kimber said. “We don’t want that to have to happen again.”
With her crayons secured tightly in a plastic Ziploc bag on the airplane’s dashboard, Caty waved out of the window to Steve Barbour, the longtime president of Pilots for Christ.
The motor rumbled, propellers spun and off they went.
AN IRREPLACEABLE LOSS
Brett and Kimber Emmons’ only birth daughter, Kenna, was born with combined immunodeficiency syndrome, or CID. The CID caused her immune system to function improperly and attack itself, which left her highly susceptible to any germ.
Along with the extremely rare condition, Kenna also suffered from autoimmune lymphoproliferative syndrome. Doctors told Kimber the duality of Kenna’s disease was the first case they’d ever seen.
In fall 2008, Kenna took a turn for the worse. Her CID had progressed and she needed a bone marrow transplant or she likely would have developed lymphatic cancer. It took a year and a few matches to find a donor. When she received her transplant in February 2010, it wasn’t an easy transition.
Kenna’s body accepted the host cells, but they attacked her stomach and skin. Ninety-eight percent of her skin was covered in a fragile and painful purple rash.
Kimber spent a full year in the hospital with her daughter in 2009 while Brett stayed home on the ranch. The family was planning to get together for Christmas the next year to make sure they didn’t spend a third straight Christmas apart, but after Kenna’s brush with death in November, money was getting tight.
That’s when Pilots for Christ stepped in.
Pilots for Christ, a program that offers emergency medical transportation to patients and families, usually flies regionally. Cincinnati was too far.
But Doug McDuff, who owned Gillette’s Ace Hardware, was heading to New York to visit his family. He decided to make an extra stop to take Malachi, the family’s oldest son, and Cale to their sister.
The boys didn’t know it at the time, but it was the last Christmas they’d ever spend with Kenna. She died that next March due to complications from both diseases.
But if it weren’t for Pilots for Christ, the family wouldn’t have had an appropriate goodbye.
TRYING TO MOVE ON
The months and years following Kenna’s death were difficult. Doctors told Brett and Kimber that if they tried to have another baby, the chances of having one with a similar disease to Kenna’s was high.
“We were informed that it’d be like lighting a match if you were sitting in a can of gas,” Kimber said.
They always wanted a big family and a house filled with children. They couldn’t possibly put themselves and their two boys through that again.
The next best option was adoption. They looked around Montana, but were shocked to find that because Kenna’s death was marked “an unfortunate accident” they were essentially red flagged for adopting there.
“Kids that need a home are kids, no matter where they’re from,” Kimber said.
So they set their sights overseas and a few months later met with and all but signed off on a young boy and girl from Moscow.
After spending a month with them in Russia, Kimber flew home and when she landed, so did news that Russian President Vladimir Putin signed the Dima Yakovlev Law that banned citizens of the United States from adopting children from Russia.
“In the span of 13 months we buried a child and abandoned two more,” Kimber said. “We were beyond devastated.”
For the next three years, the four-person family focused on themselves and worried about the people in the house instead of others. They took some steps back and re-evaluated. But the urge to grow their family persisted.
Because they had money already invested in an international adoption agency, they decided to start the process again in 2015.
Three young girls came across a screen one day when Kimber was looking through children. After months of some back-and-forth, Kimber was on a plane to Poland to bring her three new daughters to America.
Brett and Kimber knew going into the adoption that Caty was born with special needs. She had minor cases of cerebral palsy and epilepsy. Kimber, a special needs teacher in Broadus, said the family “went into this with eyes wide open.”
Kimber’s college roommate had epilepsy so she was used to being around it.
A little more than two years after having the girls in their home, Caty’s seizures grew severely worse. The medication used to curb Caty’s seizures played games with her brain. There were hallucinogenic that made her tired, worn out and not herself.
About three weeks ago, Kimber took Caty to see Dr. John Binder in Billings, Montana, for a more advanced screening. After an MRI and CAT scan, it was found that Caty had a cyst made up of cerebral membrane fluid that was taking up 90 percent of the left hemisphere of her brain.
“He basically told us that Caty was born with half a brain,” Kimber said.
Binder recommended that they seek treatment, further expert advice and more scans immediately.
It was all happening again. A sudden diagnosis. A rush to make medical appointments. The threat of their family getting smaller.
PILOTS TO THE RESCUE AGAIN
Steve Barbour has been the president of Pilots for Christ since its inception in Wyoming.
The organization is an international one, but started in Wyoming in 2005.
Most of those pilots are in the Gillette area, Barbour said.
All members, pilots and organizers are volunteers. The trips are funded through donations, sponsorships and grants.
“Every family has a story,” Barbour said. “Our big thing is to show compassion to these families and to help others in need.”
These families get strapped financially as medical bills pile up. A trip from Broadus or Gillette to Denver for appointments would be a long journey in a car.
“They get so down in the dumps financially,” Barbour said. “One has to stay with the family, so they’re separated all the time (and) they’re making so many trips.”
Lynn Ritter is the executive director for Pilots for Christ Wyoming. She’s also taken over the role of mission coordinator, going through the requests and arranging flights or road trips for as many families as possible.
Ritter said the organization has 58 active pilots and is always looking for more.
Ritter first heard about the Emmmons’ story from Barbour and the rest of the mission approval committee. Ritter said that it’s not common to accept a mission from the same family twice, but this was an easy exception to make.
“I like getting the phone calls, talking with people, pray with the families,” Ritter said. “We try our best to meet their needs, so it’s nice to see that we can help people this way. It’s very rewarding.”
AFTER A DAY IN DENVER
Kimber’s oldest son Malachi dropped the two off at the airport Tuesday morning. The last time the 23-year-old flew out of Gillette, his younger brother Cale stood closely by while McDuff lead them in prayer.
Their sister Kenna was waiting in Cincinnati. It was Christmastime and the whole family would be together again.
That was seven years ago.
Before boarding the plane earlier this week, Gray led Caty, Kimber and Barbour in prayer.
“We pray for the outcome of this trip and that it’s all good for Caty,” Gray said.
On the tarmac, Barbour helped Caty up the wing of the plane and into her seat. After getting her coat caught in the plane’s door, Gray buckled the 9-year-old in safely and slammed the hatch shut.
Before the flight, Kimber admitted that she and Brett were nervous. But there were signs of hope. If the doctors were able to remove the cyst, then Caty could become even more of a normal young girl.
“We could be parenting a girl we don’t even know yet,” Kimber said. “That’s exciting.”
Even with her epilepsy, Caty manages to do most things that doctors in Poland never thought she’d be able to do, like use the right side of her body.
“She is a normal kid. She’s smart, beautiful, capable,” Kimber said. “We have a saying that we’re working on when people try to help Caty do something like zip her jacket. ‘No thank you, I can do it myself.’”
After two long appointments of brain scans, reactionary exams and sleep tests, the doctors in Denver came to a decision. It wasn’t the one Kimber thought was coming.
In the next few weeks, Caty will have to have a hemispherectomy, an ultra-rare procedure where the two halves of the brain are separated.
When Caty has a seizure, which she has had anywhere from 150 to 200 in a day since the spring, the communication between the two sides of the brain is disrupted.
Brain hemispheres are split by a deep groove, but they talk to each other through a band of nerves called the corpus callosum.
Caty will have parts of her left hemisphere taken out where her seizures start, then have the corpus callosum cut so the hemispheres of her brain can’t send signals to each other anymore. This way, if a seizure starts in the hemisphere that doesn’t work right, it can’t spread to the healthy one.
Because Caty has had this for a while, her brain has already established both English and Polish quite well. However, the surgery will require doctors to transfer all of that information safely from the left side of her brain to the right.
Caty will lose some mobility on the right side of her body and will be wheelchair-bound for some time following the procedure.
Kimber said that the goal is to get on the road to recovery as quickly as possible. She’s already had meetings with Caty’s school to up their 30-minute-a-week physical therapy to every day.
“Hopefully, the loss of mobility or sensation will be minimal,” Kimber said Friday from her home in Broadus. “It will be drastic at first, but the mind and body are amazing. Kids are resilient.”
The biggest adjustment will be Caty’s eyesight. After the surgery she will lose vision in the right half of each eye.
Kimber said she had a minor panic attack while walking in the hospital doors. The memories came back and she froze for a minute.
“We’ve walked this road before,” she said. “This is not a place we expected to be at all.”
Caty has been taking it as well as a 9-year-old could. She couldn’t stop smiling after the airplane ride with Gray. At the doctor’s office, she showed off how high she could jump, how high she could count, how fast she could run up the stairs.
Kimber doesn’t want to talk about maybe or probably. She doesn’t want to hear about a 75 to 90 percent chance that Caty’s seizures will be reduced or gone after the surgery. It’s either 0 or 100 percent, that’s it.
After Kenna, she likes to live in absolutes. She’s an optimist, but wants it told to her straight.
One thing she can count on is that the Emmons family will be together this Christmas.
“We will be together,” she said. “We promised each other we will not be apart again. That’s not an option.”
As for Caty, she’ll continue to live by her mantra: She can do this herself.