|Sarah Atchison’s spirits are buoyed by the recent progress shown by daughter Callie. (Barry Chin/Globe Staff)|
Daughter with rare illness gives Sox hopeful extra incentive to make team
FORT MYERS, Fla. - The small rock is tucked between the first two fingers of Callie Atchison’s left hand. This is hardly something out of the ordinary, the 2-year-old having spent the previous half-hour picking up stones and tossing them into a puddle near the back fields at the Red Sox player development complex as her father plies his trade on a mound nearby.
But there’s something else. There’s another rock, this one in her right hand. This is pointed out to Sarah Atchison, Callie’s mother. She smiles, a bit of pride in her eyes.
It’s hard not to notice Callie’s hands, as she plays on the walkways and in the grass. Her right hand is encased in a splint, still not quite used to grasping objects. Her left bends awkwardly at the wrist, curved nearly 90 degrees. And yet, as fans walk by, as they notice the little blonde child, no one asks about her arms. They note the splashing water, the mother’s tolerance. They don’t mention her arms. People almost never do.
Callie, the first child of Scott and Sarah Atchison, has thrombocytopenia-absent radius (TAR), a rare genetic disorder that manifests itself primarily in low platelet counts and absence of radius bones. As Dr. Ellis Neufeld, associate chief of Hematology/Oncology at Children’s Hospital in Boston puts it, “It could be one of these one-in-a-million things.’’
In her first two months, Callie had 10 blood transfusions. In January, Callie had surgery on her right arm to move tissue from the outside of her wrist to the inside to straighten her hand. And it was Callie, too, who brought her father back to the United States, to compete for a bullpen spot on a team with a roster nearly settled.
Atchison, who pitched in the majors for the Mariners (2004-05) and Giants (2007), spent the past two seasons with the Hanshin Tigers. The Sox signed the 33-year-old righthanded reliever before he left for Japan, then continued to scout him while he pitched there, bringing him back to the organization on a one-year deal this offseason.
His daughter needs special care, regular therapy, and she needs to be closer than the 13 hours from her hospital in Dallas that she was in Japan. So the family has come back, with no assurances. It was not primarily a pitching decision to return to the United States. It was a Callie decision.
“We learned a lot more medical stuff than we ever thought we would learn with her,’’ said Atchison. “But she’s amazing. It’s crazy to watch her do things and figure out ways to do things that you’re just like, ‘That is not how I would do that,’ but it makes perfect sense for that being the best way for her to do it.
“It’s really neat to watch her. She’s a blessing in our lives.’’
The doctor suggested a specialist.
“They couldn’t see her right arm,’’ Sarah said. “They kept buzzing me with this little thing to see if she would move. I’m like, great, so she has no right arm and she’s missing part of her left arm. This is crazy.’’
It was getting late. Sarah and Scott hadn’t eaten in hours. They got to their car, and the tears flowed.
“I’m upset,’’ Sarah said. “You don’t want anything to be wrong with your to-be baby. Then we got home and talked about it. I think one of the first things I said was, ‘We’ll just have to get her specialized golf clubs.’ She’ll just figure it out.’’
Callie was born the next morning at 7, with no complications. She had short arms. She lacked a radius in each. But no one had known to look further. It wasn’t until a nurse practitioner noticed the bruises and the petechiae - tiny red dots from bleeding under the skin - that anyone brought up TAR. That’s hardly surprising. According to the US National Library of Medicine, TAR affects one in 100,000 newborns.
She had been born with just 6,000 platelets, which aid in clotting. The normal count is 150,000-300,000. She was transferred to another hospital, where she had her first five blood transfusions. She moved to the hematology and oncology clinic. She had five more.
It was only later that the Atchisons could relax, that every drop of blood no longer meant an immediate call to a hospital.
“Her last one was Dec. 20, 2007, and the last time we got her checked, she was at 200,000 platelets,’’ Sarah said. “We were very, very fortunate with her.
“The first time [the doctor] said it was over 100,000, I was just gob-smacked. Oh my gosh. ’Cause it’s not like anything we did or it’s not anything anybody did. It was just her.’’
Doctors moved soft tissue from the outside of her right hand to her inside (thumb side) to help straighten it and increase flexibility. With additional therapy, the Atchisons hope, Callie will increase the use of the pincher grasp with her thumb and forefinger, instead of using the index finger and middle finger, making it easier for her to write or use scissors.
“If it’s just the hands, there’s a possibility of a stigma of growing up with hands that don’t look like everybody else’s,’’ said Neufeld, who has seen just two cases of TAR in his career. “Some patients do remarkably well getting adjusted to that.
“If the surgery makes your hands functional, that’s what really counts, if you can write and stuff like that. This isn’t a condition that affects your intelligence, for example. It doesn’t affect your ability to relate to other people, except so far as your forearms are short.’’
That worries Sarah. She spends hours on the Internet, reading posts on a TAR support group website.
The kids she reads about, she says with a voice buoyed by hope, lead normal lives. They swim. They play soccer. They cheerlead.
In Callie’s case, a complicating factor might be her knees. While she just began walking in September, it’s unclear whether she will have kneecaps, as they remain cartilage at this stage in her development. Her legs are slightly bowed, her gait a touch unsteady.
She may have to have braces on her legs. But no future procedures are planned, save for the one to her left arm, which the Atchisons expect will happen next offseason. As Scott reflects on the surgery that was performed less than two months ago, he said, “It’s amazing how much it has changed.’’
“He’s got some weapons to get lefties out,’’ said pitching coach John Farrell. “The cutter is a very effective pitch for him. So there’s some experience, and there’s stuff that allows him to attack both lefthanders and righthanders.’’
“Theo [Epstein] told me I’d have a chance to win a spot, and that’s all I can ask for,’’ Atchison said. “I’m getting a little older. I need to be somewhere where they’re going to contend because that’s who’s going to use somebody in my position, whereas a team that’s not going to contend might be looking at younger guys and I don’t really fit that bill anymore.’’
So he returned, an opportunity for himself melding with an opportunity for his daughter. In addition to one surgery completed and one on the horizon, the Atchisons will put Callie back in physical therapy, which she needs twice a week; it had fallen off in Japan because of the language barrier.
The Atchisons don’t know whether they’ll have another child. The risk of TAR might be too great. They remember the moments of discovery, the tears, a brand-new father sitting in front of a computer screen trying to educate himself on a strange condition.
“At first, it’s hard to describe,’’ Scott Atchison said. “But after a few minutes, it’s like, well, that’s not going to change the way we feel about her or anything else. This is our daughter, and we’re excited to have her.
“We’ll figure out what we need to figure out after to help her as much as we can and get her in a place where she leads a full life and there’s no problems.
“We don’t want her to ever think that she’s hindered by anything, that she can’t do something because of this. If she wants to do something, she’ll do it. Go find a way. We’re not going to hold you back.’’
Amalie Benjamin can be reached at firstname.lastname@example.org. Follow her on Twitter @amaliebenjamin.