“I've heard a thousand stories of what they think You're like,
But I've heard the tender whispers of love in the dead of night.
And You tell me that You're pleased,
And that I'm never alone,
You're a Good Good Father.
It's who You are, it's who You are, it's who You are…”

 

Christian asleep while being monitored during his first trip to Riley Hospital for Children. The trip consisted of Christian spending 66 days in the Pediatric Intensive Care Unit. | PHOTO COURTESY OF DAUGHERTY FAMILY

72 Hours

On Oct. 23, 2017 in Albany, Indiana, Christian screamed in his bedroom, and collapsed on the floor. His parents, Brad and Amanda, immediately called 911, and an ambulance brought him to Ball Memorial Hospital. Realizing it was life or death, he was rushed to Riley Hospital for Children in Indianapolis.

Immediately going into surgery, it was discovered that Christian had a tumor the size of a baseball which ruptured beginning the Daugherty’s story. Due to unexpected and immense amounts of bleeding during the surgery, doctors stitched Christian back up, and hoped for his brain to stop swelling, which would allow for further surgery.

Christian’s original tumor, seen here, is attached to his brain stem and is 44.1 mm by 42.03 mm wide and is 1.88 mm deep into the brain stem. The tumor has been kept at bay by various medications, but is impossible to remove due to the sensitivity of the brain stem. | PHOTO COURTESY OF DAUGHERTY FAMILY

“Three days is how long they gave him to survive,” Amanda said. If Christian did not begin to show signs of recovery within 72 hours, his brain would swell too much and cause damage to his brain stem and other functions.

“That was the hardest three days I have ever lived in my entire life,” Brad said. “We sat there and listen to the heart monitors and just watched. We watched for our child to either live or die.”

At the 72 hour marker, Christian’s brain had stopped swelling and the tumor resection (removal) surgery began.

66 Days and 66 Miles

(left to right) Grace, 6, Christian, 6, Eli, 8, Madyson, 13, pose for a photo in Christian’s hospital room at Riley Hospital for Children Nov. 30, 2017, just over a month after Christian was first admitted to the hospital. The siblings were not able to visit Christian often due to flu restrictions and the severity of his care. Christian would cry and beg his siblings not to leave at the end of the day. | PHOTO COURTESY OF DAUGHERTY FAMILY

After the initial “punch” of the tumor discovery, the family discovered another “punch” — it was cancer. Another punch soon came, that it was an incredibly rare form of tumor with the name Pleomorphic Xanthroastrocytoma, also known as PXA 3.

Finally, a fourth punch explained that the tumor was caused by a never-before-seen type of gene fusion. The cancerous tumor paired with the CDC42SE2 and BRAF genes. The BRAF gene is commonly mutated with cancer, but the CDC42SE2 has never been found to be fused with BRAF nor cancer before.

The family was devastated — how do you take the news that your son has brain cancer and move forward? Some people can’t, but the Daugherty family turned to God, their family and each other for support.

His second surgery consisted of the removal of the baseball sized-tumor. At the end of the surgery, Christian’s brain has swelled to the point where it was unable to be safely replaced. Due to the significant swelling, the left half of his brain was removed.

Christian was not expected to walk, play sports, if even speak again. Amanda and Brad went to Riley with one child and would return with another.

Christian spent 66 days in the Pediatric Intensive Care Unit at Riley Hospital for Children in 2017. He suffered from hysteria, pain, fevers and chills before contracting pneumonia. | PHOTO COURTESY OF DAUGHERTY FAMILY

Christian was placed onto a gene-targeted oral chemotherapy. The combination of the chemotherapy treatment and other medication proved to halt the tumors’ growth — for now. Soon he began hallucinating, screaming and fighting but was not able to articulate his thoughts and pain. While being hand-fed, no one knew what the future would hold for the twin.

After a medication switch brought him out of hysterias, physical therapy soon began. For the second time in his life, Christian learned how to eat, speak, walk and move on his own.

Soon he came down with pneumonia he contracted during his stay. The pneumonia caused infection to fill his lungs, and a third surgery gave Christian a drainage tube. This tube was inserted into his lungs, and drained the infection from his body.

Christian points to his butterfly in Riley Hospital. The butterfly was signed by Christian on his last day of physical therapy during his original 66 day visit to Riley Hospital. | PHOTO BY MADELINE GROSH

Finally, after 66 miserable days, Christian was released from Riley Hospital for Children, and travelled the 66.6 miles home to Albany.

Christmas at Home

Dec. 28, 2017, the Daugherty family returned to their home in Albany, Ind., and was welcomed by a parade of EMTs, firefighters and police officers from the county.

The family celebrated the next day with their Christmas plans by opening stockings, gifts and more. Most of which had been donated by the community and various organizations.

When classes resume in January from winter break, Christian returned with them. Resuming 1st grade, full days and all activities were what Christian looked most forward to. Meltdowns and anger still occurred, but the family worked with Christian to find tactics to help counter the pain and anxiety he still felt.

Gym class was a struggle at first, as Christian was not able to participate. Once realizing, the class and teachers worked to find daily games and activities for Christian to enjoy in place of gym. Not wanting to hurt anyone’s feelings, Christian asked to have a different member of class be his “partner” for the games.

Christian spent six weeks traveling to and from the Chicago-area for proton beam therapy, another form of cancer radiation treatment. The treatment was not visibly wearing Christian down, but the exhaustion and anxiety of being away from family was intense. Here Christian is dressed in a gown and robe preparing to head into his daily radiation. | PHOTO COURTESY OF DAUGHERTY FAMILY

The Fourth Therapy

After a routine MRI in June of 2018 showed the drugs were no longer keeping the tumor at bay — the tumor had begun to grow once again.

A second resection surgery was scheduled for the following week. With this in mind, the family threw together a last minute vacation to the Great Wolf Lodge in Cincinnati, Ohio.

Christian found himself suddenly in pain and began puking, his brain was hemorrhaging, or bleeding. The tumor had ruptured once again, and he was rushed to Cincinnati Children’s Hospital. With the bleeding and pain under control, Christian was rushed via a mobile ICU vehicle back to Riley Hospital for Children.

With Christian stabilized, the family awaited a few days for his neurosurgeon, Dr. Jeffrey Raskin, to return from international travels. During the second resection, almost the entirety of the tumor was removed from his brain stem.

Christian took one pill for pain medicine and one Tylenol. He returned home two days after his third brain surgery.

The second resection was sent to labs at Purdue to investigate why the tumor was no longer responding to initial medications. After a normal summer, proton beam therapy began Aug. 6, 2018, to be an additional form of radiation in attempts to destroy the cancerous tumors.

The family made a point to make weekly trips to the Triple XXX Root Beer stand in West Lafayette on their way to and from the Northwestern Medicine Chicago Proton Center in northern Illinois. | PHOTO COURTESY OF DAUGHERTY FAMILY

Proton beam therapy is a more pinpointed form of radiation and uses positively charged energy, instead of x-rays, to destroy cancer cells. For six weeks, Brad and Amanda took turns traveling to Northwestern Medicine Chicago Proton Center in Warrenville, Ill. and staying in Albany with the rest of the family. Weekends were always spent in entirety, including Christian, back in Albany.

During his daily radiation, Christian requested to listen to Good, Good Father on repeat. With no pain or side effects, Christian and his parents would find something new to do in the Chicago-area every day. On Sept. 17, 2018, the family said their good-byes, and stopped by the Triple XXX Root Beer stand in Lafayette one last time and headed home.

After deciding to continue chemotherapy, Oct. 18 brought the news everyone had feared: an MRI showed the tumor had continued to grow despite all efforts to deplete it. The tumor had also began to put pressure on the brain and was nearing the area which controls the breathing. One year after the initial rupture, Oct. 23, the family discussed their options.

A Luau to Remember

Make - A - Wish ran in with plans, ideas and a full-paid trip to Hawaii for the Daugherty family.

The kids’ first trip in the air brought over 21 hours of travel time, grumpy kids and parents and beautiful smells of the island state. Nov. 2 was the first full day, and the family was able to enjoy their toes in the sane, “the bluest water in the world,” kissing dolphins, playing with sea turtles and more. The family is endless with stories, laughter and love from the trip.

I’m not scared to die, because I know I’ll go to Heaven and that I’ll see my family again, soon

Christian loves Moana, and this movie is what guided the family to the 50th state and the Polynesian Culture Center. After the seven-day sudden vacation, the Daugherty’s returned to Indiana with tans, Conch shells and memories which will last a lifetime.

Christian was approached in early November about what he wanted his wish from Make-A-Wish to be. Loving his family and Moana, Christian asked for a trip to Hawaii. Spending a full seven days in the island state continues to be one of the family’s favorite memories of being together. Beach and pool days were frequent, but so were boat rides, kissing dolphins and a trip to the Polynesian Cultural Center in Oahu was also a must. | PHOTO COURTESY OF DAUGHERTY FAMILY

Christian is an avid fan of the superhero Flash. His birthday party was themed Flash colors and decorations, as well as about half of his wardrobe. It is common for Christian to first meet someone and immediately ask to show them his super speed. | PHOTO BY MADELINE GROSH

The Birthday Bash

February 10th was the twins’ eighth birthday. Just a few days prior, the Daugherty’s received another devastating phone call: an MRI showed a total of five tumors growing in Christian’s head. Yet again, the cancer had adapted to the medications.

Christian and his twin sister, Grace, hold hands before cutting their cakes at the 8th Birthday Bash in Muncie, Ind. All decorations, food, activities and games were donated by community members to help celebrate the twins’ birthday. | PHOTO BY MADELINE GROSH

Immediately Brad and Amanda began to plan the biggest and best birthday party they could imagine. They announced their plan on social media, and the donations began. A location, the food, tables, chairs, a bounce house, carnival games and giant cakes were all donated almost immediately.

Christian hides his face from both the camera and falling hair during a haircut prior to his fifth brain surgery in Feb. 2019. The bump above his right ear is a tumor doctors will remove during surgery to test further against medications and to alleviate Christian’s head pain and aches. | PHOTO BY MADELINE GROSH

The community came together to clean up MadJax, a recently remodeled warehouse, to throw the party. The twins entered the scene the Sunday following their birthday wowed by the world.

The Facebook event brought over 300 adults and children to play, celebrate, pray and give thanks for Christian and Grace. Family members, cousins, the youth group, Miss Spirit of Indiana and strangers all stopped by to witness the party and give their blessings to the family.

The very next day, another call from the oncologist came. Christian’s fifth surgery — originally scheduled for March — was being moved to the following week. Christian stopped his oral chemotherapy immediately, shaved off his hair and enjoyed a single snow day with his brother and sisters.

His surgery was scheduled for Feb. 25, and was quicker and required a smaller incision than originally planned. The doctors removed the protruding tumor on the right side of his head, and sent the tumor to Purdue labs for further research.

Christian went home the following day, and returned to school and normal activities soon after.

Christian drinks one of four lemonades requested for dinner after his fifth brain surgery on Feb. 25, 2019 at Riley Hospital for Children. His father, Brad, looks out the window reflecting on past trips to Riley and what the future holds for the family. | PHOTO BY MADELINE GROSH

Grace, Christian’s twin sister, runs though their house during renovations in the spring of 2019. While caring for their four kids, the family had loss touch with the state of their house and discovered electrical, plumbing and structural problems. | PHOTO BY MADELINE GROSH

Trying Normal

Since the surgery, Christian has been living life how any other kid would. With the downs of cancer and chemotherapy, the ups also come along. Christian continues to be invited to various events across the county in recognition of his fight, he recently learned how to fish with his grandfather and siblings and Batman even came to visit Christian once again.

Batman, otherwise known as John Buckland of West Virginia, works through the charity, Heroes 4 Higher which gives kids with terminal illness hope and a reason to keep fighting: not all superheroes have powers. Batman came to Albany to visit both Christian and another young lady at his elementary school who was recently diagnosed with leukemia. The two both had the opportunity to ride in the Batmobile, enjoy lunch with Batman and even were given special Batman throwing knives.

Putting so much focus into their kids and Christian’s condition, the Daugherty family did not realize the shape their house had become. One day when going to plug in a wax melt, Amanda realized a problem, and the outlet had melted and was about to catch on fire. As a cry for help, the family reached out to friends and family about what to do next. Out of amazing kindness, their kitchen has been undergoing a full remodel to fix all electrical, plumbing and structural problems the house has recently succumbed to. Volunteers have visited daily to help on the project while Amanda and Brad work, as well as continuing to bring dinner for the family since the stove has not yet been replaced.

Gratitude, kindness and understanding can go a long way, and it can truly show what a community can do when they come together out of love.

Brad Daugherty takes a moment to himself while waiting for Christian to have labs done before an appointment with Christian’s oncologist, Dr. Alex Lion, and the pulmonary team at Riley Hospital. Going into it, the family knew this appointment would be one of the hardest they have faced. | PHOTO BY MADELINE GROSH

Test on Test on Test

April 27, 2019, Christian woke up with a headache -- not an uncommon occurrence. Soon after breakfast, however, Christian began puking. Puking and headaches are the sign of the tumor hemorrhaging, again. Rushing to Riley Hospital for Children’s emergency room, the Daugherty’s dropped the other three kids off at their grandmother’s house. Once at the ER, Christian immediately was given an IV and taken back for both an MRI and Cat Scan. The scans were negative for bleeding.

After speaking with the oncologists at Riley, the Daugherty’s were released to return home for the night. A dinner trip to Tacos 46 in Speedway was on the menu via Christian’s request.The following Tuesday, the Daugherty’s returned to discuss the weekend’s events with Christian’s main oncologist, Dr. Alex Lion. Upon arrival, the pulmonary care team was there to speak with the family, as well.

Since the fall of 2017, the Daugherty’s never expected to have their son as long as they have been blessed with him. With every event, every ER trip and every doctor visit, reality seems to set in a little deeper that his time may be coming soon. After the most recent ER visit, Dr. Lion realized this as well, and the Daugherty’s agreed to sign a do not resuscitate form for their following trips to the hospital.

The pulmonary team spoke with Christian about how he wanted to die, where he wanted it to be and what he thought was going to happen.

Christian’s oncologist, Dr. Alex Lion, feels the scar from Christian’s most recent tumor resection in February. The family learns more about his tumors, changes his chemotherapy medication and signs a do not resuscitate order during this visit to Riley Hospital. | PHOTO BY MADELINE GROSH

“I’m not scared to die, because I know I’ll go to Heaven and that I’ll see my family again, soon,” Christian explained. He also said he wanted to die at home surrounded by his family. Hugs, tears, kisses and sniffling silence filled the moments to follow.

The MRI showed the tumors had grown even more since the family’s last visit to Riley. Christian has also had more and worse headaches since the ER visit in April, some have even debilitated him for the day entirely. Always standing up after the pain, Christian runs, laughs and loves everyday. In hopes of combatting the growth of the tumors, Christian has been switched to a new chemotherapy drug and is now taking two forms of the medication.

After the medical check-up and conversations, a tour of Riley Hospital for Children’s Clinical Research Center (CCRC) was arranged. Dr. Lion brought the Daugherty family in to meet the scientists who work daily with Christian’s resected tumor cells.

After discussing what is happening with his cells, Christian was invited to see his cells under a microscope. Christian’s cancer cells are the first pediatric cancer cells to successfully reproduce inside laboratory mice -- which is groundbreaking within the research world. After continuing the current project, the scientists at Riley’s CCRC will submit the research to the American Cancer Society for national studies in hopes of helping other patients, both pediatric and adult, and hopefully discovering a way to help Christian.

Christian made sure the scientists, doctors and his family knew that it is okay if he doesn’t get the help he needs -- Christian simply cares about helping other kids. No matter what is discovered about his cancer cells, Christian’s number one priority is to always help others.

——— ——— ———

Christian’s father, Brad, comforts Christian while he experiences pain, fatigue and a headache after his appointment April 30 to Riley Hospital. The family always goes to lunch after their appointments, and this appointment was found to be emotionally, mentally and physically tolling on everyone involved. | PHOTO BY MADELINE GROSH

As Christian’s story continues, so does the research into his rare gene-fused cancerous tumor. With ongoing research across the nation by genetic teams and mice testing, a variety of drugs have been offered to Christian to reduce the size of the tumors. Medicine begins to shrink the tumor and then the cancer begins to survive off another protein, i.e. the cancer is adapting to survive against all medical efforts.

Because the tumor is attached to his brain stem, it is impossible to fully remove the tumor. Without proper medication to shrink or keep the tumors at bay, the medical community is stumped.

This story will be updated continuously.