Luna is a magical, sassy, and determined one year old from Las Vegas, Nevada where she lives (and enjoys lots of cuddles) with her mom and dad, Robyn and Glenn. Luna loves playing music and painting. In fact, this month’s “Live in the Light” t-shirt design includes finger paint artwork by Luna!
“Luna is definitely the strongest person I’ve ever met and the strength of our family. She is definitely what reminds us every moment to stay in the light, even in the darkest times.”
This month’s story is one of relentless advocacy guided by the light of a determined girl, even in the darkest of times.
Robyn and Glenn noticed Luna experiencing eye and cheek twitches when she was about three months old. They took her to a local Emergency Room in Indiana to rule out seizure activity and expected to only be there for a few hours. Robyn and Glenn were shocked to learn that Luna had hydrocephalus and extensive brain damage called cystic encephalomalacia. Luna was admitted to the hospital with plans to have shunt surgery to treat her hydrocephalus.
Early the next morning, doctors told Robyn that shunt surgery was futile and they were not going to operate. The neurosurgeon could not understand how Luna was functioning with the devastation to her brain matter. However, she explained it was impossible to place a shunt in Luna, even with the very mild hydrocephalus she presented at the time. Palliative care told Robyn and Glenn to prepare for the chance that Luna could pass away within hours or days. The couple was completely blindsided by how drastically things changed since they brought Luna to the Emergency Room.
After a few days in the hospital, doctors began to wean Luna’s sedative medications Luna and she began to stabilize. On top of a devastating diagnosis and prognosis, there was an error with insurance and the family was discharged from the hospital without hospice care. They were told they would never be alone and now they were faced with caring for Luna on their own.
Doctors had said Luna would never develop further or reach future milestones. However, Luna socially smiled for the first time the night they came home from the hospital. Her light began to shine in the darkness. Luna continued to defy the odds of her diagnosis. Luna’s seizure medication controlled her seizures and she continued to do things she was never expected to do.
Despite her prognosis, Luna continued to live and the quest to find a surgeon to place a shunt began. A second opinion with a neurosurgeon in Boston confirmed that Luna’s condition was fatal and inoperable. Robyn tried to explain that the brain scans do not match how Luna was functioning as she continued to meet milestones.
Robyn and Glenn decided to move back to Las Vegas to have more support in their search for a surgeon and to be able to qualify for hospice care for Luna. Robyn, determined to find someone to help their daughter, wrote dozens of letters to pediatric neurosurgeons around the world. None of her letters or messages were returned. She called major pediatric hospitals to ask for help, but was turned away because the family couldn’t afford the thousands of dollars out of pocket the facilities required to review Luna’s case.
About a month after the move, Luna had her first major health decline. She was having trouble eating and was severely dehydrated. Robyn and Glenn took her to the Emergency Room. Robyn recalls, “For the first time to me, Luna looked very sick. Her head was very big compared to her body now and she was losing her hair. She was very skinny, like a skeleton. It was a shock to see a child like that because you rarely see a child with hydrocephalus who is unshunted in America.”
Luna was admitted to the hospital for fluids. During her stay, a kind doctor listened to Luna’s story and really heard Robyn and Glenn. He was determined to help the family find hospice care upon discharge. When they returned home, hospice care was in place for Luna. They believed it was only a matter of days until Luna would pass away.
In September of 2019, Luna stopped eating and the family was sure it was the beginning of the end. The hospice team placed an NG (nasogastric) tube in Luna for comfort care medication. After 48 hours of having the NG tube in place, Luna perked up, wanted to nurse and she slowly gained weight.
The pressure of cerebral spinal fluid on Luna’s brainstem caused by the unshunted hydrocephalus continued to increase, putting more and more stress on her body. In October, Luna began to have cyanotic seizures, during which she would stop breathing and turn blue. Luna’s pain increased leading to the need for stronger medication. She began to regress and lose milestones like rolling over, putting her hands in her mouth, playing and cooing. It was getting harder and harder for Luna to live.
By January, Luna’s health continued to decline as her pain escalated and her pain medication increased. She lost her ability to nurse and was being fed completely through her NG tube. Robyn remembers, “It felt so out of control. I was trying to scream from the rooftops to find somebody to help Luna before we ran out of time”.
During this stressful time, Robyn continued to navigate insurance challenges, seek other opinions, wrote to news stations and openly shared their story on social media. The family finally reached a turning point when they received a new hospice nurse who became pivotal in their journey. The nurse paved the way for Luna to receive another opinion from a pediatric neurosurgeon in Utah, however the team also concluded that Luna’s case was inoperable and they would be unable to help her.
With precious time passing and Luna’s health declining, Robyn and Glenn’s fight to save their daughter’s life continued. “I just watched her every day fighting so hard to stay here with us. How could I not keep fighting so hard to find the person to save her?” Robyn shares. She compiled a list of doctors from her followers on Instagram and began to research doctors in Southern California. She was set to send hundreds of copies of Luna’s scans to doctors all over the world in the hopes of finding one surgeon who would operate. Their hospice nurse expedited the process by cutting red tape and opening doors that only someone in the medical world could.
Within days, Robyn narrowed the search down to a few doctors to actively research and pursue. She was drawn to a surgeon from Children’s Hospital of Orange County (CHOC), who was highly recommended by other parents of children whose lives he had saved. When Robyn saw his picture on the hospital website, she finally felt a sense of hope. She remembers reading, “He and his team strive to use the least invasive measures possible, but when those measures don’t apply or no measure is available, they will pioneer a new technique.”
Understanding how emergent Luna’s case was, a teleconference was scheduled within a day of Dr. Muhonen receiving the scans. During the call, the surgeon confirmed that Luna did not need a new pioneered technique, that all she needed was a shunt and he was willing and able to operate. Robyn and Glenn were touched by the surgeon’s compassion and the way he spoke directly to Luna on the conference call. They knew they had finally found the doctor they had been searching for over a year.
The next week, the family traveled to Children’s Hospital of Orange County and entered through the Emergency Room to ensure Luna would have her long-awaited surgery. Luna fought so hard to get to this day, but she was so sick, her parents worried whether she would make it through the surgery.
The surgery was a tremendous success and Luna was a new child almost immediately. She exceeded the team’s expectations, including being extubated right after surgery, and quickly became a super-star of the hospital. Luna continued to recover well and was discharged after only three nights. The family stayed in town for follow-up appointments with the surgeon who saved Luna’s life.
The shunt relieved the pressure on Luna’s brain and allowed her brain tissue to expand revealing that she has more brain tissue than originally thought. The surgery has allowed her brain to heal and regenerate. She has lost over ten centimeters in head circumference since surgery and it continues to decrease.
Luna has a long road of neurological rehabilitation ahead of her, but she is thriving and blossoming with each day. Luna works hard in Physical, Occupational, Speech and Vision therapies. “She’s very tenacious and really likes to show people that she knows she’s the only one in control of her journey,” Robyn shares. Luna is also healing through creating intuitive art with Robyn. They enjoy connecting with each other while drawing, water coloring and finger painting.
“Luna is definitely the strongest person I’ve ever met and the strength of our family. She is definitely what reminds us every moment to stay in the light, even in the darkest times,” Robyn tells of their journey.
Time to get loud shouters!
Throughout the month of October we will be shouting love for Luna!
So click here to shop now where every purchase in October will help cover travel expenses for ongoing care appointments and new therapies for Luna. You can also start a monthly subscription and shout love for great kiddos like Luna each month!