“It’s officially known as pre-implantation genetic diagnosis coupled with in-vitro fertilization,” Dr. Singh continued. Essentially, the umbilical cord blood of a baby contains a higher proportion of hematopoietic stem cells, which convert very easily to growing and healthy bone marrow cells. Those healthy bone marrow cells would then be transplanted into Jeff, who, if the transplant were a success, could live a very normal life.
The in-vitro fertilization process would be standard—harvesting and fertilizing eggs from Francesca’s over-stimulated ovaries. Pre-genetic diagnosis would follow—testing the resulting embryos to see if one was both a match for Jeff and Fanconi’s Anemia negative. If one were found, the embryo would be implanted, hopefully resulting in a normal pregnancy for Francesca.
Francesca said nothing, but she could feel Evan’s mood lifting, hope surging through his body again. Why didn’t she feel the same way? What was restraining her?
Would you really create a baby merely for the sake of a few milliliters of blood? a voice asked her. This child—wouldn’t he feel used, knowing that he had been born out of necessity, putting the value of Jeff’s life above his?
No, Francesca thought. I would love this child just as much as I love Jeff. The procedure is in no way going to harm him or her—
But Francesca—you nearly retched at the first thought of it. Why?
Just—shut—up, Francesca thought, teeth clenched.
Dr. Singh must have seen her face, because he said gently, “It is an enormous decision and commitment. There are many fiscal as well as physical and emotional issues to consider. Please discuss it more thoroughly at home, and meanwhile, I’ll initiate a search for a match for Jeff on the registry. All you need to do is fill out these forms here, and sign.”
He slid a small stack of papers toward them, and Francesca began filling in the spaces mechanically. The smell of roses came back to haunt her, their sweet phantom scent filling her nostrils as she bent over the paper, mocking her with the memories of happier times.
Francesca willed herself to stop pacing and sat down on one of the waiting room’s vinyl-covered chairs. Evan remained standing, and Jeff played with a pile of Legos on the floor. Hands in her lap, she stared distractedly at the nurse at the desk, who kept sneaking her cell phone from the drawer whenever she thought no one was looking. Hunched over, the nurse texted furiously on her Blackberry. She jumped as the desk phone rang loudly, thrusting her cell back into the drawer in one admirably smooth movement.
“Hello, you have reached Dr. Singh’s office in the Children’s Hospital, how may I help you?” Her voice was sweet and perfectly soothing.
Francesca looked away. Just yesterday morning she had jumped for the phone much less gracefully after being startled from sleep. She had contemplated not picking up, but the ringing was persistent. Groaning, she had lifted herself out of bed, throwing a clumsy hand on the phone.
“Hello, is this Mrs. Cohen?” The soothing, familiar voice of Dr. Singh filled in.
She yawned and rubbed her eyes, her brows drawing in a little. The day before, she had taken Jeff to a routine appointment with Dr. Singh like she had each Tuesday since their first meeting three weeks ago. But Jeff hadn’t been feeling as well lately; he seemed to be more listless than usual, and Francesca hadn’t know if it had been just a figment of her imagination, or had his skin become a little bluer…? He also seemed to be taking shorter and sharper breaths; Evan had noticed this too, remarking worriedly that Jeff needed to rest more often. Dr. Singh had scribbled dutiful notes on those symptoms, and then they conducted all the usual blood tests. Like he had said to her every week, the results of the tests would be in within two days.
But it hadn’t been two days— maybe they’re just operating a little faster than normal, she thought to herself.
“Yes, this is she. How are you, Dr. Singh?”
“Good, good.” There was a slight hesitation. “I have some news concerning Jeffrey. I’m a little worried.”
At this, Francesca’s spine had stiffened, and adrenaline rushed through her system, eliminating all vestiges of sleep. Her fingertips turned white as she clutched the phone tighter.
“As you know, we’ve been monitoring Jeff’s blood counts - red blood cells, white blood cells and his platelets - for a few weeks now,” Dr. Singh began. He went on to explain that for the past several weeks, Jeff’s blood count had been pretty normal—a couple of dips here, a couple of spikes there, but stable overall. On the whole, a little lower than he’d like it to be, but nothing dangerous. This week, however, Jeff’s red blood cells plummeted, followed closely by his white blood cell count. In fact, it was shockingly low, officially putting him in anemic range. From here, Jeff was sure to continue declining rapidly.
“The prognosis at this range is not good—I will call the registry today to see if there have been any matches found for Jeff, and then we must discuss the possibility for Jeff’s treatments immediately,” Dr. Singh had said, trying to maintain his balance between urgency and professionalism. “Could you come in tomorrow?”
Francesca had hung up the phone, shrinking back into bed, fighting off the inevitable tears.
And now here she was, the wait seeming interminable, growing more electric by the second with menacing unknowns and questions. Would she have to make her decision today? She closed her eyes, willing her stomach to stop rolling. For the last couple of weeks, Francesca had refused to think about having another child as a serious option, holding out hope for the registry. “It’s just….not right,” she would say when Evan asked her for the umpteenth time why. “I just don’t know Evan, I feel nauseous every time I think about it.” And Evan would shake his head, walking away before it could turn into a screaming match.
Finally, the nurse with the soothing voice called out Jeff’s name, and the family hurried into Dr. Singh’s office. He swept in a moment later, green eyes dark with worry.
“Got a flow-wer!” Jeff said, toddling over to proudly present a mass of Legos constructed in no intelligible form to Dr. Singh.
“Very cool! I like it!”
“For you!” Jeff said as he thrust it up at Dr. Singh, narrowly missing the entrance of his nostril.
“Me? No, I couldn’t! But why don’t you give it to Mommy instead?” Dr. Singh smiled.
“Ok!” Francesca smiled and laughed, pretending to smell it as Jeff toddled off to make more.
Dr. Singh lowered himself into his chair, and Francesca released a breath she didn’t know she was holding in. Dr. Singh hunched forward, his hands clasped together. “I’m glad you could make it in today. How are you two?”
“We're grateful you could make time for Jeff. Obviously, we just want to know what’s going on,” Evan said, his eyes intent on Dr. Singh.
“While Jeff is now very anemic, we still have time. Time for treatment.” His eyes slid to Francesca, who began studying her hands. “He needs to begin within the next two years, which I know sounds like a long time, but—“
“We know it’s not.” Francesca said firmly, but quietly.
There was an uncomfortable pause. The clinking of Lego crashing against Lego stopped as Jeff looked up, his eyes wide.
No, there was never enough time. Francesca had spent many a day sitting at the piano, playing a couple notes here, a couple of notes there, savoring the few hours in the early morning she got to herself. Cautiously, she would ease herself into thinking about having a baby to save Jeff. At first, she would shudder when thinking about it. But as she thought about it more and more often, the instinctive shudders were replaced by more concrete doubts.
At first, Evan had thought Francesca was so averse to the treatment because of their financial situation. True, all of Jeff’s treatments and doctor’s visit were expensive, and money was tight. Another child would be difficult, but Francesca didn’t care. She made it very clear that something as irrelevant, fleeting and superficial as money would never get in the way of saving Jeff’s life. It was more complicated than that. It was that they would be conceiving a baby for its umbilical cord blood. They would be using this child as a tool. And the thought of that just sickened Francesca.
Of course, of course, Francesca thought, she would love this child just as much as she loved Jeff. And using the umbilical cord blood wouldn’t hurt the baby at all. Personally, she would have been honored to cure her older brother.
But still, Francesca thought, no child of mine should be conceived as a tool.
Her hands were gripping the armrests of the office chair so tightly that her knuckles were white. Evan touched her hand, drawing her out from her wallowing thoughts, and Dr. Singh resumed his hunched-over position at the desk.
“I’m afraid you don’t really have much of an option at this point. I called the registry yesterday and pushed them for results, and they express mailed them to me this morning.” He slid a sheet of paper across the table. Underneath the official header of the National Bone Marrow Registry was a short, stark list of five ID numbers of potential donors.
Francesca’s heart pounded in her throat as she read them. On their first visit, Dr. Singh had explained that matches were made by testing at certain areas of DNA, or loci, on Jeff’s chromosomes. They would profile ten different loci and see if they matched any donors.
Preferably, all ten sites would match, which would lead to minimal risk of the marrow being rejected. Since Jeff was a child, it would be better if his bone marrow came from someone younger. The younger the donor, the more tolerant Jeff would be of mismatches at the loci, and an eight out of ten loci match would potentially be acceptable.
Now, the finger of Dr. Singh intruded upon her field of vision, tapping upon the first ID number. “They gave us our best five matches, in order of ranking. As you can see, the best donor available for Jeff is an adult, with an eight out of ten match. Unfortunately, it seems like Jeff has some rare alleles that statistically have been proven to not tolerate mismatches well.” Dr. Singh’s eyes were heavy, almost imploring.
“So….this means….” Evan grasped the arms of his chair tightly. Francesca thought about putting her hand on his, but decided against it.
“Professionally, I think it’s too much of a risk. A nine out of ten match is iffy, so the odds that an adult eight out of ten match will work—well, let’s just say the odds are not stacked in your favor.”
Francesca’s gut began to roll, churning with dread and anger.
“At this point, there is really only one option left, unless you want to monitor the registry and hope that a donor will come in within the next six months or so,” Dr. Singh said softly. “But a decision must be made soon,” he urged, his eyes gentle, fixed upon Francesca.
“We know,” Evan said, turning his less-gentle gaze in her direction.
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