Family Finds Comfort In Faith, Positivity During Daughter’s Battle With Brain Tumor
May 9, 2020 at 1:03 a.m.
Family Finds Comfort In Faith, Positivity During Daughter’s Battle With Brain Tumor
By David [email protected]
“One week at a time, one appointment at a time. Just making the best of every day,” said Andrew Slaymaker, Payton’s father. “I was thinking about something today, and I feel like I need to share it with you. At Riley (Hospital for Children), they sent us home and said focus on quality of life, and that’s what they recommended us to do. And it didn’t hit me like it’s something we needed to start, it hit me like it’s something we’ve always done. We make the best of every situation. We choose to be happy. We choose to have joy.”
He said one could easily find dark places in situations like they’ve been in, but “we’ve never ever felt alone. Never ever.”
“We do have our moments of weakness. We’re human. But we have so many people there that have randomly called or texted and said, ‘We’re filling in the gap for you,’” Kimberly, Payton’s mom, said.
“So many prayer warriors,” Andrew said, recalling his request for prayers recently was shared on Facebook over 600 times. “It was just overwhelming, but so comforting, to know that even when you don’t have the strength to pray for yourself, that there’s others praying for you.”
On July 11, 2019, the Slaymakers returned home to Claypool from a family trip to Texas. They noticed Payton was “looking down,” and that lasted for a couple of weeks, according to Kimberly.
“It got to a point where we were getting concerned and we just assumed it was because of her always being on her tablet or phone, stuff like that, with a neck issue,” Andrew said.
Kimberly decided to take Payton to Grossnickle Eye Center to get her eyes checked. They examined her and suggested Payton get an MRI because they couldn’t tell that anything was wrong.
She said that’s how they found out Payton had Diffuse Intrinsic Pontine Glioma (DIPG), a type of brain tumor. Payton’s tumor is on her brain stem, which makes it inoperable.
“So we had the eye appointment on a Monday, and then within a couple of days we were at KCH for the MRI. And then they had us at Riley (Hospital for Children) the next day,” Andrew said.
“We had no idea, and they said that with that type of tumor, unless it’s pressing up against the nerves or something like that, you would never know,” Kimberly said.
As for treatment, she said they learned it was DIPG at Riley, but Riley could only offer six weeks of radiation and had no clinical trials available for it.
“They did not specialize in this brain tumor,” Andrew said.
They spoke to a radiologist at IU Health who recommended taking Payton to see Dr. Maryam Fouladi at Cincinnati Children’s Hospital. Fouladi is one of the head doctors of the DIPG Registry nationally, Kimberly said.
“At that point, we had sent, after Riley had given us her diagnosis, we had sent her information that Riley had to numerous hospitals,” Andrew said, including St. Jude’s, New York, Boston and Cincinnati. “We waited and waited and prayed for clarity because we had our bags packed and we were ready to go wherever we needed to go.”
The only hospital that called the Slaymakers back was Cincinnati.
“It was aggravating at first, because it was like ‘Why aren’t these other people calling us back?’ But that was the answer to our prayers, the clarity where we needed to go and that’s when we soon discovered that that was where the registry was for DIPG. They’ve got a registry of every child that is on it and what has been done treatment-wise to every child at this point,” Andrew said.
Kimberly said DIPG commonly affects school-age children between 4-11 years old. She said they were told there was only up to 300 cases of DIPG diagnosed a year.
When they went to Cincinnati, Kimberly said they had several clinical trials open, along with doing the radiation, and Payton was able to get in one trial. Andrew said the hospital was quick about getting Payton on a treatment plan.
Payton had her first six weeks of radiation in August. She then took chemotherapy on Tuesdays and Fridays until the beginning of March. Another MRI was taken, and they learned Payton’s tumor had grown. At that point, she was taken off the experimental medication, and doctors suggested the best treatment at that time was a second round of radiation. Payton just finished that two weeks of radiation.
“Which is a total of 40 treatments and radiation. Which is a lot for a 9-year-old. It’s a lot,” Kimberly said. “You have to wear a specially-made mask that fits your face. She lays down and they actually have to snap the mask onto the table so you can’t move.”
“She was a champ, though,” Andrew stated.
“It’s a little scary, but it’s kind of cool because you get to rest,” Payton said.
The Slaymakers returned Thursday from Cincinnati.
“They kind of wanted to check her out and stuff just to make sure because she had a little bit of scare there. Some swelling from the radiation because she wasn’t on a steroid or anything like that,” Kimberly said. “She’s doing good. She’s walking better. Her speech is better.”
They will return to Cincinnati in a couple weeks to have another MRI to see what the radiation did, and then go from there, Kimberly said. Andrew said it’s possible Payton will be put on another clinical trial in the next few months.
“They said they’re pleased with how she looks,” Kimberly said. “Just one day at a time.”
In August, the family was surprised with a fundraiser by friends and family.
“We were blown away by the first fundraiser. We would never have expected the blessing that the first fundraiser did,” Andrew said, noting that any event they’ve had – including a parade last month before Payton’s second round of treatment – has been “phenomenal.”
“Through all of this, we try to keep as much normalcy as possible,” Kimberly said.
After Payton’s first six weeks of treatment, she still went back to school, dance and Girl Scouts.
Kimberly and Andrew agreed they haven’t let the COVID-19 pandemic get to them.
“We’re kind of in a bigger battle,” Andrew said.
“People have asked us though like, ‘I’m sure you’re all stressed out about it.’ I’m like I’m not worried about it because we know who holds tomorrow, she knows who holds tomorrow, and why worry about something you can’t control?” Kimberly said.
“The slogan we’ve had through this whole thing is ‘Fear is a liar.’ That’s kind of how we live by,” Andrew said.
Named after former Indianapolis Colts and Denver Broncos quarterback Peyton Manning – because the Slaymakers are big Colts fans – Payton got to talk to Manning on the phone as she was on her way to her first round of radiation. She said Manning told her he would have been named Peyton by his parents whether he was born a boy or girl and he encouraged her to stay strong.
“He was nice. He sounded like he was tired,” Payton recalled.
Andrew said, “From what we’ve heard, within 10 minutes of him getting an email about our daughter, he called her.”
“It was definitely a spirit lifter,” Kimberly said. Andrew said the parade last month also was.
A friend of Kimberly’s owns Northern Indiana Graphics and has made T-shirts, decals and now license plates to help raise money for the Slaymakers. Andrew said Payton has a “bunch of ideas” for more merchandise.
“I was thinking because my dad wears hats all the time, to have like ‘Fear is a liar’ across it,” Payton suggested.
Kimberly said people can follow Payton’s story on Facebook called Payton’s Story.
Payton just wanted to tell people, “Thanks for the prayers.”
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“One week at a time, one appointment at a time. Just making the best of every day,” said Andrew Slaymaker, Payton’s father. “I was thinking about something today, and I feel like I need to share it with you. At Riley (Hospital for Children), they sent us home and said focus on quality of life, and that’s what they recommended us to do. And it didn’t hit me like it’s something we needed to start, it hit me like it’s something we’ve always done. We make the best of every situation. We choose to be happy. We choose to have joy.”
He said one could easily find dark places in situations like they’ve been in, but “we’ve never ever felt alone. Never ever.”
“We do have our moments of weakness. We’re human. But we have so many people there that have randomly called or texted and said, ‘We’re filling in the gap for you,’” Kimberly, Payton’s mom, said.
“So many prayer warriors,” Andrew said, recalling his request for prayers recently was shared on Facebook over 600 times. “It was just overwhelming, but so comforting, to know that even when you don’t have the strength to pray for yourself, that there’s others praying for you.”
On July 11, 2019, the Slaymakers returned home to Claypool from a family trip to Texas. They noticed Payton was “looking down,” and that lasted for a couple of weeks, according to Kimberly.
“It got to a point where we were getting concerned and we just assumed it was because of her always being on her tablet or phone, stuff like that, with a neck issue,” Andrew said.
Kimberly decided to take Payton to Grossnickle Eye Center to get her eyes checked. They examined her and suggested Payton get an MRI because they couldn’t tell that anything was wrong.
She said that’s how they found out Payton had Diffuse Intrinsic Pontine Glioma (DIPG), a type of brain tumor. Payton’s tumor is on her brain stem, which makes it inoperable.
“So we had the eye appointment on a Monday, and then within a couple of days we were at KCH for the MRI. And then they had us at Riley (Hospital for Children) the next day,” Andrew said.
“We had no idea, and they said that with that type of tumor, unless it’s pressing up against the nerves or something like that, you would never know,” Kimberly said.
As for treatment, she said they learned it was DIPG at Riley, but Riley could only offer six weeks of radiation and had no clinical trials available for it.
“They did not specialize in this brain tumor,” Andrew said.
They spoke to a radiologist at IU Health who recommended taking Payton to see Dr. Maryam Fouladi at Cincinnati Children’s Hospital. Fouladi is one of the head doctors of the DIPG Registry nationally, Kimberly said.
“At that point, we had sent, after Riley had given us her diagnosis, we had sent her information that Riley had to numerous hospitals,” Andrew said, including St. Jude’s, New York, Boston and Cincinnati. “We waited and waited and prayed for clarity because we had our bags packed and we were ready to go wherever we needed to go.”
The only hospital that called the Slaymakers back was Cincinnati.
“It was aggravating at first, because it was like ‘Why aren’t these other people calling us back?’ But that was the answer to our prayers, the clarity where we needed to go and that’s when we soon discovered that that was where the registry was for DIPG. They’ve got a registry of every child that is on it and what has been done treatment-wise to every child at this point,” Andrew said.
Kimberly said DIPG commonly affects school-age children between 4-11 years old. She said they were told there was only up to 300 cases of DIPG diagnosed a year.
When they went to Cincinnati, Kimberly said they had several clinical trials open, along with doing the radiation, and Payton was able to get in one trial. Andrew said the hospital was quick about getting Payton on a treatment plan.
Payton had her first six weeks of radiation in August. She then took chemotherapy on Tuesdays and Fridays until the beginning of March. Another MRI was taken, and they learned Payton’s tumor had grown. At that point, she was taken off the experimental medication, and doctors suggested the best treatment at that time was a second round of radiation. Payton just finished that two weeks of radiation.
“Which is a total of 40 treatments and radiation. Which is a lot for a 9-year-old. It’s a lot,” Kimberly said. “You have to wear a specially-made mask that fits your face. She lays down and they actually have to snap the mask onto the table so you can’t move.”
“She was a champ, though,” Andrew stated.
“It’s a little scary, but it’s kind of cool because you get to rest,” Payton said.
The Slaymakers returned Thursday from Cincinnati.
“They kind of wanted to check her out and stuff just to make sure because she had a little bit of scare there. Some swelling from the radiation because she wasn’t on a steroid or anything like that,” Kimberly said. “She’s doing good. She’s walking better. Her speech is better.”
They will return to Cincinnati in a couple weeks to have another MRI to see what the radiation did, and then go from there, Kimberly said. Andrew said it’s possible Payton will be put on another clinical trial in the next few months.
“They said they’re pleased with how she looks,” Kimberly said. “Just one day at a time.”
In August, the family was surprised with a fundraiser by friends and family.
“We were blown away by the first fundraiser. We would never have expected the blessing that the first fundraiser did,” Andrew said, noting that any event they’ve had – including a parade last month before Payton’s second round of treatment – has been “phenomenal.”
“Through all of this, we try to keep as much normalcy as possible,” Kimberly said.
After Payton’s first six weeks of treatment, she still went back to school, dance and Girl Scouts.
Kimberly and Andrew agreed they haven’t let the COVID-19 pandemic get to them.
“We’re kind of in a bigger battle,” Andrew said.
“People have asked us though like, ‘I’m sure you’re all stressed out about it.’ I’m like I’m not worried about it because we know who holds tomorrow, she knows who holds tomorrow, and why worry about something you can’t control?” Kimberly said.
“The slogan we’ve had through this whole thing is ‘Fear is a liar.’ That’s kind of how we live by,” Andrew said.
Named after former Indianapolis Colts and Denver Broncos quarterback Peyton Manning – because the Slaymakers are big Colts fans – Payton got to talk to Manning on the phone as she was on her way to her first round of radiation. She said Manning told her he would have been named Peyton by his parents whether he was born a boy or girl and he encouraged her to stay strong.
“He was nice. He sounded like he was tired,” Payton recalled.
Andrew said, “From what we’ve heard, within 10 minutes of him getting an email about our daughter, he called her.”
“It was definitely a spirit lifter,” Kimberly said. Andrew said the parade last month also was.
A friend of Kimberly’s owns Northern Indiana Graphics and has made T-shirts, decals and now license plates to help raise money for the Slaymakers. Andrew said Payton has a “bunch of ideas” for more merchandise.
“I was thinking because my dad wears hats all the time, to have like ‘Fear is a liar’ across it,” Payton suggested.
Kimberly said people can follow Payton’s story on Facebook called Payton’s Story.
Payton just wanted to tell people, “Thanks for the prayers.”
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