“Mom, can I have red hair, like you?” inquired tow-headed Elizabeth. Alia, trying to reason with her independent four year old daughter, (whose desire was often larger than she was), said, “Oh, honey.. hair color is just one of ‘those things’ – you pretty much get what you get.. besides, your blonde hair is beautiful!” Not one to give up easily, Elizabeth sighed, “Can I ask God?” Mom said, “Yes, you can” she paused, then added, “it’s just that God doesn’t usually answer those kinds of prayers.” Undeterred, the innocent, fervent prayer went up. Recanting this story, 2 ½ years later, while snuggling her still inquisitive, and yes, RED-HEADED Elizabeth in her arms, Alia and husband Josh agree: Elizabeth has taught them you can ask God for ANYTHING.
The Bailey’s path from then to now has been long and winding, often landing in deep, dark recesses, however — none so desperate that it couldn’t be illuminated by Elizabeth’s tenacious spirit and the joy she exudes. She has a strength and fortitude that go well beyond her years.
From the beginning, Elizabeth seemed somehow different, lacking the energy of her brothers. Josh and Alia thought perhaps it was because she was their first girl. When little sister Katie arrived two years later, they realized Elizabeth’s malaise wasn’t gender related. Josh and Alia took Elizabeth to various doctors, looking for answers to her lack of energy for even simple activities, and complaints of ear aches.
In February, 2009, doctors removed Elizabeth’s tonsils and adenoids. For a week, their four year daughter seemed much better. Josh recalls their family stopping to play at a park after a follow up appointment and Elizabeth bounded out of the car, joining the other kids. He remembered thinking, “Wow.. maybe that’s what’s been wrong, all this time..”
A week later, Elizabeth asked her parents if she could talk to them. “Sure!” they said, the three of them sitting on the loveseat. Elizabeth looked at her Dad and said, “I don’t feel right, Daddy. Will you always be here to take care of me?” Josh looked deep into his daughters blue eyes. Holding her gaze, he said, “No matter what happens, I am always going to be here to take care of you.” She then turned to her Mom, and said, “My neck hurts..” Elizabeth leaned her head on her Mom’s shoulder and began choking. Rushing Elizabeth to the ER, an ambulance took the family to Durango where they nervously awaited the outcome of tests. An MRI revealed a large mass in the back of Elizabeth’s brain. Flight for Life immediately took Elizabeth and her Dad to Denver where specialists were preparing for emergency brain surgery.
On March 24, 2009, Doctors found a grade 1 slow growing tumor that was applying pressure to Elizabeth’s brain stem. Her vitals were starting to shut down. Both parents stayed in Elizabeth’s room that night, praying, seeking strength and rest. One of Elizabeth’s nurses, John, reassured them, saying, “Your little Lizzie is a fighter. I can tell just by looking at her..” Awakening the next morning, Alia tried to focus her eyes. To her surprise, there, in her field of vision, was little Elizabeth, sitting up in her hospital bed, staring at her. She smiled and gave her Mom a little wave! Josh and Alia knew they’d turned a corner, although Elizabeth’s recovery was slow going. She needed to re-learn how to walk and speak, as her vocal chords were paralyzed. Knowing she needed to find new ways to communicate, Elizabeth came up with a series of blinks and winks, (involving one or both eyes), along with tongue thrusts — which worked great for her and her family.
In June of 2009, Elizabeth was doing great; she was walking, even running and playing. However, a follow up MRI revealed her tumor had doubled in size. Crestfallen, but determined, the family braced for the first six weeks of chemotherapy and radiation. A side effect was Elizabeth losing her long, blonde hair. As this family walks together, through whatever comes their way, the boys shaved their heads in loving support of their sister. And, yes – when Elizabeth’s follicles returned, they were the same glorious hue as her Moms, just six months after she had prayed for red hair.
In January, 2010, Elizabeth had another surgery to remove a cyst growing on her tumor. She again lost her ability to walk. This determined little girl pushed through, again; literally learning, once more, to put one foot in front of the other. The continuous medical treatments were taking their toll on little Elizabeth; she contracting pneumonia nine times. The Bailey family began home-schooling their children to reduce the threat of further illness. In May, they began staying at the Ronald McDonald House in Colorado Springs, travelling for chemotherapy, follow-up doctor appointments and physical therapy.
1.11.11 was a day of special significance, Elizabeth’s port was removed! She proudly exclaimed to her Mom, “I’M NO LONGER A CANCER PATIENT!” Seeking normalcy, Elizabeth and her Mom talked about her being able to go to Kindergarten. Not desiring to contain her enthusiasm, Elizabeth broke into a spontaneous, joyful dance. Given the circumstances for her delight, it felt particularly cruel that her stocking feet slipped on the hard wood floor. Elizabeth hit her head in the unexpected fall.
At just six years of age, Elizabeth was again paralyzed from the neck down. Rushed back to Denver, an MRI showed swelling at the base of her brain. Steroids were given to reduce the swelling; thankfully, they seemed to be working. Doctors planned on releasing Elizabeth Friday of that week, but, suddenly, her oxygen levels dropped dramatically. Medical treatments, including ECMO, didn’t seem to be helping. Doctors prepared the Bailey’s for the worst: the prognosis was if she survived, there would be residual impairment. Elizabeth would probably never sit or stand, let alone walk. The possibilities were strong that there would be brain damage.
Alia felt so alone in the hospital room; her husband, Josh, travelling through a winter storm to be with her and Elizabeth. January 31st marked the dramatically changing week that had gone from “she can go home, to .. we don’t believe she’ll survive.” A woman unknown to Alia, came and sat beside her. She said simply, “remember what you believe.” Almost immediately, Alia could feel the prayers of many lifting her up. She went from feeling like she couldn’t breathe to knowing it would all be alright, somehow.
One to continually prove the doctors wrong, Elizabeth not only SURVIVED, but with a determined heart, sat up in April! Enduring hours of physical therapy, she surprised staff at the Ronald McDonald House in early June by WALKING down the hall, ALL BY HERSELF taking slow, steady, methodical steps. We were undone by her perseverance, and honored to be a part of her process as she continues to heal and be fully Elizabeth, who, by the way, is as smart as they come!
Reflecting back, Josh said, , “When all this started, God said, ‘I’m the one in control, Josh. You’re going to have to surrender ALL.’ I said, ‘OK, God. It’s a deal.’ I have – and, you know what? He is the one in control.” He continued, “The Ronald McDonald House has been a huge hug to my family. Everyone has treated us as if we’re their own family. When everything is falling apart around you, the Ronald McDonald House is a safe spot.” Alia added, “I agree. We became one big family, surrounded by LOVE. We were able to rest and be taken care of. Staff, families and volunteers knew us as the Bailey family, not just a family with a critically ill child. Elizabeth has a great sense of humor. Katie’s dimples are darling. Shane always wants to help and Garrett has a great giggle. We were individuals, not just a ‘cancer family’, because, truly – we are so much more than that. Add to it that your long hallway was the perfect place for Elizabeth to learn to walk again, made it that much more perfect!”
Josh closed with, “We’re so thankful for the Ronald McDonald House. Thanks for all you do!”