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2011-01-13

Seeking hope in stem cell therapy

By Carolyn B. Edwards BCC

You probably hop out of bed in the morning, run to the bathroom, fix a pot of coffee, take a shower and get ready for work without really thinking about any of these things as you do them. And you most likely have never given much thought to your stem cells.
Bandera High School sophomore April Otwell must think about these mundane activities. In fact, it takes April, her mom Jackie, and nurse, Leslie Blackwell, to get her ready to face the day - every day. April needs a lot of assistance to get up, get cleaned up, get dressed, get fed, have her catheter changed and take her medicines.
In February of 2009, April suffered a spinal cord injury that left her paralyzed from the neck down. She has limited motion, but no feeling, in her arms, and no motion in her legs. She spends her days in a souped-up wheelchair equipped with special features that allow her to move around on her own.
When she is well, she goes to school, but her condition makes her susceptible to infections, breathing difficulties and, recently, a blown-out right elbow that required surgery. Then she stays at home and the school sends a teacher to her as part of the Homebound Program.
One might imagine that suffering such a debilitating injury would cause the victim to sink into depression. No doubt April has days when she feels down, but generally she is upbeat and very funny.
Stem cell therapy
Last week, she participated in a consultation with a team of doctors in southern California in preparation for a course of stem cell treatments.
“I’m not expecting a miracle,” the bright-eyed teenager said. “I would just like to get some function back. My hands, my bowel and bladder, so I don’t have to be messed with every four hours.”
Her mom, Jacqueline “Jackie” Otwell, who now spends her days as April’s primary caregiver, murmured quietly, “We do expect a miracle. We expect miracles every day.”
Using a laser attached to her eyeglasses, April did a lot of the online research required to get involved in an experimental stem cell therapy program. She uses the laser light just like anyone else would use a mouse. “She bobs her head up and down and looks like a chicken,” said Jackie. “I can pretty much do anything on the computer you can do,” challenged April. “Except games. I can’t work enough of the controls.”
She found a stem cell program in Germany but that raised concerns about her ability to handle such a long distance flight. Her father heard of the California program and April checked it out.
If she qualifies, she will begin with four stem cell procedures. The cells will come from the remnants of her umbilical cord, bone marrow retrieved from her hip, nose tissues or a thin abdominal sheath called the apron. “There will be no rejection, because I will be receiving cells from my own body,” she explained. The stem cells will be implanted either via IV or a spinal tap.
April is already looking forward to traveling to California where she would spend two to three weeks.
“There are so many things stem cells can be used for - eyes, arthritis. They keep learning more all the time. It’s not like taking a drug,” explained Jackie.
A typical day
A typical day for April and her circle of caregivers includes that long and thorough early morning start of the day. This is followed by a lot of doctors’ appointments, regular trips to physical therapists in Kerrville and San Antonio, and school.
Letitia Ruiz, an aide with the Bandera Independent School District, does any writing April needs to do, since her keyboard skills, while amazing, are slow. As an example, everyone should attempt writing a sentence using a laser pointer! Ruiz also scans in assignments and reading materials and emails everything to April. “We just thank God for her every day,” said Jackie. “She not only deals with the school materials, but she monitors April’s blood pressure and other health issues, too.”
April’s favorite subject is history and she takes advanced placement courses in English and history.
The Otwells are grateful to the school district, its teachers and the staff who all pitch together to assist April with her studies. “They are there to help with anything that will give me more independence.”
April’s computer skills often amaze anyone seeing her at work for the first time. “They’ll ask how I do that,” she said with a grin, “and I tell them I’m magical!”
The accident
Life for the Otwell’s changed forever on the morning of Feb. 28, 2009.
“A friend and I were going to Boerne and I had washed my hair,” April said. “I was not a typical girly-girl, so instead of blow drying my hair, my friend and I got on the 4-wheeler and I thought I’d just let the wind dry it for me.”
She had been operating an ATV since she was seven. “After you have that much experience, you get cocky,” she said. Traveling down King’s Ranch Road, at what she admits was too much speed, she began to have a problem with the braking system. When she stood up to put more pressure on the brake, the ATV flipped, throwing April and her friend, Re-nita Moore, out of the vehicle.
“I apparently landed on my head,” she continued. “When I came to, I could see the gravel below my face and I heard Re-nita screaming in the background, asking where I was and if I was okay. A man was putting a jacket over me and saying help was on the way when I lost consciousness again.”
It was two weeks later that April woke up in a San Antonio hospital just in time to hear a doctor say, “She’ll never move again.”
A month after the accident, her right lung and diaphragm collapsed. Doctors performed a tracheotomy and she found herself hooked up to a breathing tube along with a feeding tube and multiple IVs. Because of the tubes, she couldn’t talk.
“One day a friend came to visit and I told her, ‘April can’t move,’ and April just gave me this disbelieving look, and then moved her left arm!” said Jackie. “I ran out the hospital room door shouting for doctors and nurses, saying, ‘She moved her arm! She moved her arm!’”
Today, April has limited movement of both arms, but has no movement of her wrists or fingers. That’s one of the things she is hoping the stem cell treatment will improve.
As with many spinal cord injury victims, her muscles often spasm. She has learned to use the spasms to help her initiate movement and can now use her core muscles to assist her breathing.
Both mother and daughter have adjusted to the massive changes in both of their lives as much as they can.
“The worst part of this for me,” said Jackie, “is that we just assume people know what’s going on - teachers, doctors, therapists - but quite often they don’t. So communication is so important.”
One key point is April’s lack of the sense of feeling. “We have to explain to people that she can injure herself and not even know it, so they have to pay attention.” A poke from a sharp pencil, a bump against a rough surface, can lead to serious infections.
She recently had surgery on her right elbow because she had unwittingly been leaning on it in her chair too much. Before the damage became evident on the outside of her elbow, the damage had already been done to the interior of the joint.
Just for fun
For fun, April loves to be on the computer. “I do Photoshop, role play, surf the web. I also love to read, especially the Twilight Saga books, and TV programs like CSI and NCIS. I also love to eat any kind of pasta. My favorite is fettucine.”
She also likes having friends over. Although she can’t play all of the games they can, “I just like to watch them play.”
April is working on two books, one about the accident and how a spinal cord injury changed her life, and a novel with a vampire character that also involves a spinal cord injury.
She is already making plans to attend University of Texas San Antonio because of their science program and, as might be expected, April aims to make spinal cord injuries her specialty.
Thinking about friends who drifted away after her accident makes her sad and “there are kids at school who actually think I’m faking this,” she said, but she treasures new and old friends who stand by her.
Peers often feel uncomfortable around April until they get to know her better. “Little kids are the best. They aren’t afraid to ask questions. They’re so curious - and I don’t mind answering questions.”
The clever teen has developed a sure-fire technique to deal with any problems when they arrive. “Sometimes I get aggravated with people, but if I don’t want them mad at me, I tell my mom to deal with it.”
April Otwell doesn’t whine or cry about the fate dealt out to her. She focuses on achievable goals. “I try to stay as positive as possible. So, sometimes, I have to pick on my nurse!”