Saturday, December 26, 2009
Extreme Close Up Chapter 25
Monday morning Jack met with a nurse at the oncology clinic.
“I’m Marlo Dixon,” she said, shaking his hand. She motioned to a chair and gave him a warm smile. “Please call me Marlo.” What type of person did it take to be a pediatric oncology nurse? He could only admire the way she made him comfortable, asked if he’d brought any family with him. He regretted not bringing Ally, but it was probably best not to get her too involved with all this stuff.
“Human leukocyte antigen or HLA testing is used to match patients and donors for bone marrow transplants,” Marlo told him as they sat in a surprisingly un-clinical office with cheerful yellow walls and brightly colored furniture. “HLA antigens are proteins found on most cells in our bodies. Your immune system uses these proteins to recognize which cells belong in your body and which do not. A close match between your HLA antigens and the recipient’s reduces the risk the recipient’s immune cells will attack donor cells or that your immune cells will attack the recipient’s body after the transplant. We take a blood sample to test for your HLA tissue traits.”
Jack nodded, trying to remember to breathe.
“Don’t worry about remembering all this,” she said with a smile. “I have pamphlets and printed materials you can take with you when you leave. You can spend as much time as you like going over them before you make your decision.” She nodded to a stack of paperwork on her desk. “It’s very important to the success of the transplant to have a well-matched donor. The best chance of finding a match is with a brother or sister. Since we inherit half of our HLA antigens from our mother and half from our father, each brother and sister who has the same parents has a twenty-five per cent chance of matching a recipient.”
“Wow. Even that sounds low. And Sarah doesn’t have any brothers or sisters.”
She nodded. “I know. There is less chance that other family members will match. But we will certainly test parents to make sure we don’t miss out on a viable donor. There are a number of other factors that lead to improved transplant success rates.” She outlined some of the factors.
“So I’m good on all those.” Jack gave her a small grin. “I’m big, I’m young, I’m male, I’m healthy.”
Marlo smiled back at him. “Yes to all those. So, I’ll explain how the bone marrow donation process works. It’s a surgical procedure performed in a hospital. The donor receives an anesthetic and doctors use special needles to withdraw liquid marrow from the pelvic bones. Some donors receive a transfusion of their own blood. A donor’s marrow is completely replaced within four to six weeks. Usually the donor goes home the same day. Donors can expect to feel some soreness in their lower back for a few days, maybe longer. Some donors feel tired or have some difficulty walking, but are back to their usual routine in a few days, although some may take two to three weeks before they feel completely recovered.”
“Is it a general anesthesia or local?”
“Could be either,” she answered openly. “The anesthesiologist decides which the best option is. The two types of regional anesthesia used most often are spinal and epidural. They prevent the donor from having any feeling below the waist and the donor is awake through the procedure.”
Jack noticed how she always referred to the donor and recipient as a nameless people rather than him and Sarah. He supposed she was trying to make it as neutral as possible so as not to influence his decision.
“After receiving anesthesia, the donor is placed on his stomach. The doctor makes an incision through the skin on the lower back and the needles are inserted through the incision into the pelvic bones. The doctor then attaches a syringe to the hollow needle and draws out the marrow and repeats this aspiration process until the appropriate amount of marrow is collected. About a quart of marrow is collected, depending on the size of the donor and recipient. After the marrow is collected, a dressing is placed over the incision. Most incisions are small enough that there’s no need for stitches. The donor then goes to a recovery area and is monitored until the anesthetic wears off. When the donor is fully awake, he or she is either brought to a hospital room for further observation or goes home. As with all same-day surgical procedures, when a donor goes home the same day, someone other than the donor must drive.”
Jack nodded, immediately thinking of Ally.
“We follow up with you after a few days to see how you’re doing, and then we call once a week until you feel you’ve fully recovered.”
“I’ve been living and working in Iraq. I just came home to...do this. How long do you think it would be before I could go back there?”
“Are you in the service?” she inquired.
He shook his head. “Photojournalist.”
“Ah. Well, I would think you should probably stay here for three to four weeks after.”
Jack nodded. Three to four weeks. Oh, man. He hadn’t really thought ahead that far. But in the big picture of things, a few weeks out of his life wasn’t that big a deal.
“Do you have any other questions?” she asked gently.
“Are there any risks involved?” he asked. “Just so I know.”
“Of course. As with any surgical procedure, there is some risk involved. Serious complications are rare but could include anesthesia reactions, infection, transfusion reactions, or injuries at the needle insertion sites. We take every precaution to ensure the safety and well-being of the donor. You must have a thorough physical examination before you donate.”
Jack nodded, recalling Brittany telling him that.
“What about Sarah?” he asked slowly. “Are there risks for her?”
“I can’t speak about Sarah specifically,” Marlo said. “I know you are her father, but without permission from her mother I can’t give out that information. But I can tell you generally a bit about the transplant experience from the recipient’s perspective. There are some risks, risk of infection, of bleeding, of interstitial pneumonia, and of course graft-versus-host disease. Acute GVHD can occur anywhere from ten to seventy days after a transplant, though the average time is around twenty-five days. About one-third to one-half of allogeneic transplant recipients - allogeneic transplants are where the donor is a family member - develop acute GVHD. It’s less common in younger patients and in those with better HLA matches between donor and recipient. Most cases are mild, and those who develop it usually have no long-term effects, although in some cases it can be serious or even life threatening. We try to prevent acute GVHD by giving drugs to lessen the immune response, but although these help prevent serious GVHD, mild GVHD will almost inevitably occur.”
“Oh,” Jack said. “That doesn’t sound good. You know, I’m not liking these odds.”
Marlo nodded sympathetically. “I know. But think of it this way - without a transplant, Sarah’s odds of survival may be even less.”
He nodded sombrely. “Okay,” he said decisively. “I’m ready. Let’s do it.”
“You don’t need to make a decision immediately,” she cautioned him. “You can go home and discuss it with your family. You may want to talk to Brittany more about it.”
He shook his head firmly. “No. That’s not necessary. Really, I knew before I came here what the decision would be. How could I not do this?”
She smiled. “All right then. In Sarah’s case, timing is a bit urgent. She’s almost at the point in her treatment where we would want to do the transplant. So we can get you in for a complete physical this afternoon. We’ll take some blood samples for testing and we’ll know this week if you’re a suitable donor.”
When Jack got back to Carter’s place, his mind whirled with all the technical information he’d heard, and he threw himself down on the couch to go through the printed materials they’d given him. Then he realized he should call Brittany and let her know his decision.
He heard the tears choking her voice when he told her he was willing to go ahead with it, but cautioned her that it would be a few days before they knew the results of the tests to know if he was a good donor.
“You will be, I know it,” she said, her voice thick with emotion. “Thank you, Jack. You have no idea how much this means to me.”
He rubbed his face. “What about Sarah?” he asked. “Now do we tell her I’m her father?”
“Not yet. I’m not going to get her hopes up about the testing, Jack. It’s possible you aren’t a good match either, although you’re our best hope. But she’s sick. She has a lot of stuff going on. This is hard for an adult to deal with, never mind a nine-year-old kid.”
“Yeah, I know.”
“If the transplant goes ahead, then I think that would be a good time to tell her. I don’t even want to tell her this is happening, because it will get her hopes up and things don’t always work out. We’ve learned that the hard way.” She paused. “So, if it’s a go, we’ll explain things to her then.”
“Yeah. I can see that would be the best way. Okay.” He paused. “I’ll come by tonight. Sarah and I are going to finish painting the tree house.”
“Okay.” Brittany’s voice sounded strangled. “See you later.”
He hung up, tossed his cell phone on the coffee table and leaned his head back against the sofa. Jesus. Everything was so complicated.
He finished reading the information he’d been given, not that anything there was going to change his mind. A sore back for a few days was nothing compared to saving Sarah’s life.
The urge to talk to Ally about it all was so overwhelming he picked up his cell phone to call her. He flipped it open, stared at it, then slowly closed it.
Extreme Close Up Chapter 26