When Haley Flatt reached 10, she started to getting extreme migraines that would leave the side of her face numb.
Doctors said they were just side effects from her period, which had started early. But her mother Tinisha Lairson thought something was wrong.
On June 12, 2014, Haley woke up and couldn’t get out of the top bunk of her bed.
Her mother took her to the hospital and demanded them to do a brain scan.
The scan showed a large tumor wrapped around her brain stem and cutting off the cerebral fluid into her brain.
Haley has juvenile pilocytic astrocytoma, a rare brain tumor found in children and teenagers.
Though it is benign, doctors could only remove 75 percent of it since it sits in such a sensitive cluster of vessels. It means she now faces a lifetime of debilitating chemotherapy, while monitoring the tumor in the hope that it does not develop into something life-threatening.
Haley Flatt, 14, was 11 when she was diagnosed with brain cancer. She now has to get chemotherapy treatments every Wednesday to keep the tumor from growing
This is Haley’s scans before (left) and after (right) her surgery on June 17, 2014. The tumor was the size of a lemon and cutting off the flow of spinal fluid to the brain
Haley had one surgery to remove her tumor just five days after her diagnosis. The surgeon could only take out 75 percent because of how attached it is on her brain stem
When 11-year-old Haley first woke up the morning of her diagnosis, she couldn’t get out of bed. Her head was killing her and she didn’t have the energy to even sit up.
‘She called me from her phone and said “mom, I can’t get up please help”,’Tinisha said to Daily Mail Online.
At first Tinisha didn’t believe her, but when she went into her daugher’s room she saw how much pain her daughter was in.
Haley had been having severe migraines for the past year that doctors said were just due to menstruation. But Tinisha had a feeling that something was wrong.
She took Haley into a hospital near Goldsby, Oklahoma, where they live, and demanded a CT scan.
‘The doctor wasn’t very pleased with me because I was so adamant,’ Tinisha said.
It took convincing, but doctor finally agreed on the caveat that they would only do a CT scan.
And without that scan, Haley would’ve died.
It showed a tumor the size of a lemon wrapped around the right side of Haley’s brain stem, so large that it had pressed her stem away from her brain and cut off the flow of cerebral fluid.
Doctors immediately called an ambulance to come take Haley to Children’s Hospital at Oklahoma University Medical Center because they feared she would die within hours.
‘Later on that night, the doctor had let me know that if we hadn’t brought her in, she would have passed in her sleep because there was no fluid getting into her brain and back out to her body,’ Tinisha said.
Haley’s grandmother made her customized face masks that she can wear out in public. She always wears them to help prevent her from catching anythings
Haley’s siblings, Jake (left) and Dakota (right) were only three and four when she was first diagnosed. They’ve had a hard time understanding why this is happening to their sister
The first round of chemotherapy was hard on Haley and her body. This was her in January 2015 when she had to be admitted into the hospital due to a high fever and infection
JPA tumors grow slowly in the person’s body meaning that the headaches Haley was feeling for the past year were a sign of the enlarging monster in her brain.
The doctors at Children’s Hospital immediately put Haley on high doses of steroids to get the tumor under control, but no one wanted to attempt to remove the tumor.
‘They thought it was basically a death sentence because it was so large and no one wanted to touch it,’ Tinisha said.
But Dr Naina Gross, a pediatric neurosurgeon with Children’s Hospital, was willing to do the surgery so five days later she caught into Haley’s brain.
They thought it was basically a death sentence because it was so large and no one wanted to touch it.
‘It was a blessing to find a doctor that thought “hey, I can do this”,’ Tinisha said.
Only 75 percent of the tumor was removed because it is so intertwined with Haley’s brain stem. Taking anymore would’ve caused severe damage.
Not only did the surgery leave Haley with the leftovers of a tumor that is now deemed inoperable, but she lost hearing in her right ear and had numbness on that side of her face.
Now, chemotherapy is the only option to shrink the tumor, but it will never be completely gone.
Haley went into her first round of chemotherapy after her surgery, which left her drained and unable to walk.
The tumor had shrunk enough during that time that doctors let her stop treatment and live a normal life.
But an MRI scan this past April brought Haley back to Jimmy Everest Center for Cancer for 52 more sessions of chemotherapy.
The tumor had grown 25 percent to the size of about half of a lemon.
The doctors administer the chemotherapy through a port in her chest. This is when Haley was going through her first round of chemotherapy
The port was put back this April after an MRI showed that Haley’s tumor has grown. For the past 18 weeks she has been getting chemotherapy treatments every Wednesday
‘It will never be gone because they can’t remove the full tumor,’ Tinisha said.
Haley’s cancer is a low-grade glioma, meaning that the growth of the tumor tends to slow down as the child ages.
She will have to be monitored for the rest of her life but cure rates are high for children like her.
What is juvenile pilocytic astrocytoma and how is it treated?
Juvenile pilcytic astrocytoma is a tumor that happens in children and teens.
It is typically a benign tumor that slowly grows in the area it develops. It usually doesn’t spread to other parts of the brain.
The tumor develops from brain cells called astrocytes. These cells combine with others to form protective tissue around the brain and spinal cord
Symptoms differ based on where the tumor is located in the brain but people can experience:
- Balance problems
- Vision abnormalities
Treatment is dependent on where the tumor is located and if it has spread to other parts of the body.
Typically, the tumor, or part of the tumor, is removed by a neurosurgeon. The area is then treated with either chemotherapy or radiation.
But this diagnosis has already impacted her childhood.
‘She used to be the social butterfly. Always laughing, always with friends,’ Tinisha said.
Haley had to miss a lot of school during her first round of chemo, so when she went back it just wasn’t the same.
She ended up leaving public school after the start of 8th grade because of how mean children at the school were to her.
This led to Haley feeling extremely depressed and more closed off from the outside world. Tinisha is now homeschooling Haley.
‘She doesn’t really want to be around people and she’s really sad,’ Tinisha said.
Haley has been working with a therapist to help her deal with her depression and come to terms with her diagnosis.
‘She doesn’t understand why no other child has to go through what she’s going through,’ Tinisha said.
Haley has two younger siblings, Dakota, seven, and Jake, six, who have also had to come to terms with their sister’s sickness.
Tinisha said that they were both too young when Haley first got diagnosed to understand what was going on.
‘They just couldn’t understand why sister was always in the hospital,’ she said.
Now they understand it more, but they don’t get why their sister has it and none of their other friends have siblings with the same sickness.
The cancer has also been on hard on the family financially.
Tinisha said that her and her husband, John, almost lost their home and land when Haley was first diagnosed because they had to pay for chemotherapy.
They also lost two cars because the bank wouldn’t give them more time to pay them off.
This new round of chemotherapy has been more manageable for them to pay for, but the family is still struggling.
Tinisha set up a CrowdFunding campaign and Facebook page to help raise awareness about children that are dealing with pediatric cancer.