The C Word Was Always In The Back Of Her Mind
She was alone with a two year old, her husband a thousand miles away when she received the worst news of her life…and yet the doctor himself had told Clay Parrish to go on his hunting trip…that everything was going to be okay…
“We think it might be Leukemia” and with those six words the world turned upside down for Kayla Bragg Parrish of Abilene, Texas…and yet…in some way and for some reason she had expected it all along.
“The C Word Was Always In The Back Of My Mind,” Kayla shared with me. “I had seen a Facebook post about a child who had cancer, and I was following the mom’s blog.”
Kala didn’t relate the blog to her own family; she was simply a young mom who was drawn to the story, nothing more than that…or was there?
“We feel that if it had not been for social media, we might have missed this,” Clay told me last week as the couple walked me through their story that began simply with a little girl who didn’t feel well and parents who insisted upon answers.
Kinslee Parish began having pains in her legs that became severe enough to wake her in the night. As most of us would have done, Clay and Kayla assumed she was experiencing growing pains. Then, the little girl’s left foot began to swell so that it was painful for her to walk.
It was at this point that Clay became concerned enough to tell Kayla that it was time to make an appointment with their pediatrician.
The first appointment was on a Monday morning, and the doctor noticed that Kinslee’s lymph nodes were swollen. His guess was that the little girl had contracted West Nile. When her blood work came back the next day, however, it showed no trace of the virus. Her CBC was normal as was the test for mono. With these results in hand, the doctor assured them that there was no reason to worry.
By Friday, Kinslee was running a fever and just not feeling well at all so Kayla returned to the doctor’s office once again. By this point, the young parents just couldn’t get that C word out of their minds. They thought it was probably because they were following the progress of the other little girl on Facebook…and yet…
It was at that Friday morning visit with the doctor that Kayla actually raised the question with Kinslee’s pediatrician.
“Could it be cancer?”
Once again, the doctor said that there was nothing to make him believe that they were dealing with anything that serious. He prescribed an antibiotic and told Kayla that Kinslee should perk up within 24 hours.
She didn’t. Instead, she became more tired and whiney. She woke at night, crying with the pain in her legs, and her right elbow began to hurt just like the left foot.
Monday morning found mommy and baby girl back with the pediatrician. Friday’s blood work was back, and once again everything looked normal. I assume it was purely as a precaution that the doctor decided to call a rheumatologist at Cook Children’s Hospital in Fort Worth, who told him to order more blood work to check for rheumatic fever and Lupus because of the swelling joints.
So on Tuesday morning, Kayla and Kinslee again returned for yet more blood work, and Clay left with friends for an already planned hunting trip. In his defense, he had talked it over with the doctor who assured him that there was no reason for him to stay home.
The phone call came on Wednesday morning. It was the receptionist asking Kayla and Kinslee to come in to discuss the latest blood work. As you might expect, Kayla could get no real information out of the woman, but something in her voice told the young mom that things were very wrong.
“When we walked into the office, none of the girls could even look me in the eye so I knew the news wasn’t good. The doctor’s first words asked me if I thought Clay would be where I could contact him.”
“I’ve talked to an oncologist who said it looks like leukemia. You need to go to Cook today.” And then the pediatrician did something for which Kayla was so thankful. “He asked if he could pray for us before we left. He even prayed for our marriage,” Kayla told me. “I was so scared, and that prayer meant so much to me.”
So there she was. Kayla rushed home, threw what she could think of into a bag, and turned her vehicle toward Cook.
Clay was far away and not even in his own vehicle. There were no immediate commercial flights to be had, and so frantically he called a friend with a plane. While his hunting friends drove him to Dalhart, the other friend put his plane in the air, picking Clay up in Dalhart and dropping him in Stephenville, Texas where family was waiting to drive him to the hospital.
“It was crazy, but I arrived at the hospital just one hour later than a commercial flight could have gotten me there! I felt horrible. I knew Kinslee wasn’t well, and I was selfish and went hunting anyway.
“We prayed and cried…that’s all we could do. I couldn’t stop crying no matter who walked into the room. We didn’t have a clue…didn’t even know what leukemia was…didn’t know what the odds were…” the young father explained.
Today the tears have dried. While a long road still stretches in front of the Parrish family, Kayla and Clay now know that 96 percent of children with leukemia are in remission within 29 days of their first treatment. Contrast that with the 3 percent survival rate of the 1950s and even the 61 percent survival rate of the early 1980s, and you can see why the couple is confident that their daughter will make a full recovery.
Don’t get me wrong. It’s not been easy. Clay and Kayla’s son, Cason, has been forced to leave the day school that he loves because they just can’t take a chance on the germs that invariably come home from groups of young children. Naturally, staying home every single day has been a little boring for the young boy. There are also no more play dates, no more birthday parties, and no more Chucky Cheese outings with friends. The children can’t even visit the park or the zoo. It’s just too risky.
Although she doesn’t admit it, I know that there are days when the walls have to close in a little for Kayla as well. “I can’t just head to Target anymore when we need something, including groceries,” she confided. “Clay does the shopping now.”
Of course there’s always a bright side. “I spend a lot less money than I used to!” she laughed.
Most of their days revolve around what Clay and Kayla call Kinslee’s roadmap…a notebook filled with an exact outline of med schedules, dates when she will receive them, and the amounts she will take. Everything looked like total Greek to me, and yet the young parents have become experts in treating leukemia.
It wasn’t like that on that first day, however, and today they want to let other parents know what to expect.
On day one, Kinslee had surgery. Doctors inserted the port that they continue to use for treatments, and they removed bone marrow from each hip. She also received chemo through the port and chemo in the spine as well as the steroids that she would take daily for the next 29 days.
The roadmap is written in 29-day increments, and in the first 29 days Kinslee received six port chemo treatments and three more chemo treatments in the spine. Clay explained that doctors are determined that the leukemia will not travel through the spine to the brain.
After that first 29 days, the little family was thrilled to be able to return to their own home in Abilene. “We were pumped that Kinslee could start taking her treatments here in Abilene,” Clay said.
For the next 29 days, little Kinslee was to take oral chemo every night and spinal chemo once per week and, as I said, the plan was to do that in Abilene. And then her numbers (white blood count) bottomed out, making treatment impossible for the next three weeks.
“We were really scared,” Kayla confided. We didn’t even see anyone at Christmas, we were just too afraid with her numbers that low.”
Of course, in a nutshell, this just means that should Kinslee pick up a germ from someone, she would not have the white blood cells to fight it off, making even the simplest runny nose deadly.
After three weeks of waiting, Kinslee’s white blood count rose, making treatments possible once again. She did do two of those scheduled treatments in Abilene, but then Clay and Kayla decided that they preferred using Cook.
“There was absolutely nothing wrong with Abilene,” Clay told me, “But Cook has a 5th floor clinic that is just oncology, and they are not treating sick people there because everyone who enters KNOWS…Plus, at Cook we have the chance to meet other families who are also struggling like we are.
So now they drive from Abilene to Fort Worth every ten days so that Kinslee can receive her chemo. And then….they will enter what Kayla calls “the tough phase.” For 42 days the little family will move back to the Ronald McDonald House so that Kinslee can be at Cook to receive seven days of chemo and steroids and seven days off.
“This is the phase where she will lose her hair, if she is going to lose it,” Kayla shared with me.
After those 42 days of treatment are in the rear view mirror, little Kinslee will continue to follow her map. In her next series of treatments, she will have chemo every ten days for 41 days.
“The doctors tell us that they are looking for that one cancer cell that is hiding, and that is why the roadmap changes every few weeks. They are determined to find every single cancer cell in her body,” Clay explained. “This is one of the easiest types of cancer to treat and they have the greatest success with it, but the treatment is the longest…2 1/2 years.
And…finally…the Parrish family will find itself exactly where they want to be on that infernal map. Maintenance!
“That’s where we want to get, but it is also a very scary phase. It’s the phase where a child who is school age would be sent back to school. Kinslee will still be receiving chemo, just not as often. We will finish out the 2 1/2 years in this phase,” Kayla explained to me.
I asked both to leave me with some words of wisdom for those parents who will eventually follow in their footsteps.
Clay- “Pray, pray, pray. That’s all we could do, and if it had not been for the prayers of so many people, we couldn’t have done this. There is no place better than Cook Children’s Hospital. Go there if it is at all possible.”
Kayla- “I want people to be aware. Do not be afraid to follow your mommy instincts. If you KNOW something is wrong, insist that your doctor start testing immediately.”
That’s what Clay and Kayla did and as a result, Kinslee was diagnosed even before she entered the bruising stage of the disease. That has to be in her favor! Here at Texans United, we keep the Parrish family in our prayers daily and know that you will also now that you know their story.
Obviously, it is a story that has been draining, both emotionally and financially. The best of plans seldom include a toddler with cancer or the expenses that come with disease. According to Kayla and Clay, friends, family, and people they don’t even know have rushed to help them with financial expenses. Below you will find info about a benefit being hosted by friends of the couple.