Warning: This story made me cry. But I think it is a great illustration of how our brave, but sick, children truly do inspire us to be better than we are.
by Cynthia Dermody, published in Reader's Digest Jan 2008
Kathy Staub felt her heartbeat quicken and the familiar sweat coat her forehead. The 42-year-old deli clerk from Philadelphia dreaded the moment each day when she had to give her youngest son, Michael, and injection of an immune-boosting drug called Neupogen. She had to get the long needle into his arm at a 90-degree angle and hit the layer of fat between the skin and muscle. This required a quick and focused stab.
It was June 2001, and just the thought of causing any more pain to 20-year-old Michael, a college sophomore diagnosed a few months earlier with a rare form of leukemia, made her anxious. He'd tolerated two rounds of chemo, the central line catheters and bone marrow biopsies. But injections were the one thing he really hated. "C'mon, I don't like this. Do it fast, do it fast," Michael pleaded, standing in the family's living room. Kathy squeezed his biceps to try to tighten his skin and lessen the pricking and burning sensation. Then she positioned the thumb of her other hand on the plunger of they syringe. Just do it, she told herself. Focus. Focus.
Quickly she jabbed the shot into Michael's arm and, through his squirming, withdrew the plunger slightly to make sure there was no blood. Bull's-eye. She depressed the plunger fully and pulled out the shot. Then Michael adjusted the IV line attached to his chest and plopped back down on the teal blue sectional to watch TV.
Kathy could have hired a nurse for Michael while he was home between treatments at the Hospital of the University of Pennsylvania. But she wanted to be the one to clean out his catheter and give him his daily shots, IV fluids and pills. Never mind that she was squeamish at the sight of a mere drop of blood.
Kathy was close to her other two children, Melissa, 23, living at home, and Matthew Jr., 22, away at college, but she and Michael had a special bond. Kathy practically lived at the hospital when he was there for treatments. She--and the whole family, including her husband, Matthew, a grocery store meat manager--had grown extremely close to all of Michael's nurses on Rhoads 7, the floor where leukemia and lymphoma patients are treated. And not just because of the great care they gave Michael. The nurses became a support system, especially for Kathy. She ate with them, shared her fears and cried on their shoulders. They would tell her, "Michael is strong. He'll beat this," and offer back rubs when she had trouble catching an nap in the reclining chair in his room.
Kathy's appreciation of them grew when she began to understand what their jobs entailed. One of the first times Kathy gave Michael his daily shot of blood thinner, she missed and hit her own hand. It bled for hours because the anti-clotting drug had seeped into her system. She kept track of all of Michael's shots and his 50 daily pills in a notebook she'd placed in the dining room, next to his old dorm fridge. It now contained IV bags of magnesium and potassium, to replenish his electrolytes, and amphotericin, and antibiotic for the fungal pneumonia he'd caught because of his weakened immune system.
"I always thought nurses just gave you the pills and walked out of the room," Kathy says. "Now I had a whole new understanding of how they manage their time and energy. And they had three or four patients. It took me all day to manage one. But I didn't really feel like a nurse. I was just Mom."
Michael took a turn for the worse in August 2001 and was admitted back on Rhoads 7 for a third round of chemo. Kathy quit her job so she could remain at the hospital, slipping home for only an hour a day to shower when Matthew came by the hospital after work. "I never really slept, because Michael would vomit all during the night and the diarrhea was constant," Kathy says. "I would just throw away bagfuls of clothes."
It's not unusual for parents to stay with sick children round the clock. But the floor nurses noticed something special about Kathy. She was always smiling and positive, even on days when Michael was very ill or received bad news about blood counts. "It was never about Kathy or the sacrifices she was making," says Debra Dearstyne, one of Michael's nurses. "She never let Michael see how hard this was on her."
One day, Michael told one of the nurses, Felice Kloss-Heffernan, that he was so impressed by what she and the other nurses did, he planned to enroll in the nursing program when he was healthy enough to go back to college. Michel always believed he would conquer the disease. He'd done so with other hurdles in his life. Born a preemie on January 1, 1981, he overcame a learning disability and was mainstreamed into a regular classroom by the third grade. Despite good grades, he did poorly on his SATs. He gave up a trip to take a summer prep program at Widener University, south of Philadelphia, then entered as a freshman that fall. At five-nine, he was always told he was too short to play sports, yet he managed to become a linebacker on Widener's Division III football team.
When the thirst round of chemo was finished, in September 2001, Michael returned home to await the results. A few weeks later, Kathy and Matthew were devastated when Selina Luger, MD, Michael's oncologist, pulled them aside in the hall of the clinic, out of Michael's earshot, and told them, "The chemo didn't work."
"What do you mean?" Kathy asked. "So we just go to the next round?"
"There's no next round," Dr. Luger said, gently taking the arm of a now hysterical Kathy to steady her. "Michael's incurable. He's dying."
Matthew was shell-shocked at the news. Like his son, he always believed they would beat this. This can't be the end of it, he tried to convince himself. Kathy wept against a hallway window while Dr. Luger and Matthew walked into an exam room. Dr. Luger explained it could be weeks or months as Michael just nodded, speaking only to ask, "Is my mom okay? I hear her crying."
Kath continued to care for Michael at home over the next several months. But he failed to bounce back after the difficult chemo, remaining pale and listless. He was determined to attend his sister's wedding on Saturday, March 23, 2002, which he did. But the following Monday, Michael confessed that he'd been suffering from a high fever for days and had taken Tylenol to cover it up so he wouldn't ruin the wedding. Back in the hospital, test showed Michael was in heart failure.
On April 14, Michael woke from a nap on the couch and said, "Mom, you took care of me through all this. I think you'd make a great nurse. I know I'm not going to be one, but promise me you'll go back to school and become a nurse." Later he added, "I want you to work where I was treated."
"I did this for you, but I could never do it for anyone else," Kathy replied.
"There are a lot of other me's out there," Michael answered. "I want you to pinkie swear."
"Sure, Mike, sure. I'm going to be a nurse. Pinkie swear," Kathy said to humor him, entwining her little finger with Michael's.
The next day, Michel's blood pressure plummeted to 60/40. Kathy and Matthew summoned family and close friends and told Matthew Jr. he needed to come home from college right away. As the monsignor from the family's church pressed the crucifix to Michael's head and began last rites, Kathy noticed her son's breathing was becoming more labored. In his hand, he tightly clutched a silver angel medallion with the word love written on it, a gift from a friend. Matthew held his son while his mom rested her head on his. "Mickey, I'll be okay. Just let it go. No more pain, just let it go." And Michael closed his eyes for the last time.
Weeks after Michel's funeral, Kathy was still struggling to make it through each day. One night, she had a dream--although she believes it was more like a messaged. She saw Michael dressed and looking as healthy and handsome as ever. "Mike, are you okay?" she asked, getting a whiff of his trademark Perry Ellis cologne.
"Mom, I'm fine," he said. "But you have to stop crying now. You have to remember your promise."
The dream spurred her to action. On May 28, a month and a half after Michael's death, Kathy took placement tests at a local community college. "What am I, nuts?" she asked herself. "I haven't opened a textbook in 25 years." But she scored well.
Nursing school was grueling, especially for someone who'd never used a computer. It took her twice as long as the younger students to complete assignments, and there were several times she thought she' quit. But Matthew and her family continued to encourage her. "Her head was always in a book," recalls daughter Melissa. "She would study on vacations. I know Michael was on her mind the whole time, and that was her driving force." Doubling up on courses and even taking summer classes while working part-time at the deli, she eared her nursing degree, graduating cum laude in May 2006 from Thomas Jefferson University, and soon became a registered nurse.
The fall before she was due to graduate, Kathy attended a nursing career fair. She walked directly up to Beverly Emonds, a recruiter at the UPenn table. "Hi, I'm Kathleen Staub, and I want to work at your hospital," she said. "But it has to be on Rhoads 7, bone marrow transplant." In early November, Emonds called Kathy to tell her there would be an opening. But it was far from a done deal. Kathy had to convince the floor's nurse manager that Michael's history wouldn't interfere with her performance on the job. Finally, Emonds called to offer her the position.
A few days after starting, Kathy stood in one of the patient rooms holding a syringe full of Neupogen--the same drug she used to give Michael. The young leukemia sufferer, her very firs patient, was about Michael's age, and she hated shots just as much. As Kathy began the procedure and felt the familiar moistness on her brow, she couldn't help thinking of her son. But suddenly a guiding confidence came over her. She jabbed the shot quickly and precisely, like a pro. That wasn't so bad, she thought.
Each day as Kathy walks int o the UPenn hospital elevator and pushes the button to the seventh floor, she takes Michael's angel medallion from her pocket, holds it in her palm and says, "Micheal, get me through the day." The 12-hour shifts are rewarding but intense. Though memories lurk everywhere, she loves working alongside many of the same nurses who cared for her son.
Kathy doesn't often share Michael's story with the families of patients, because she doesn't want to dash their hopes. But sometimes word gets out and they ask her about him. One of Kathy's first patients, a young woman with leukemia, had developed a complication from bone marrow transplant. She was dying. Kathy flashed back as she saw the girl's mother crying at the foot of her daughter's bed. The woman turned to Kathy: "How do you get through it?"
Kathy waked her into the hall, and the woman collapsed in tears. "You never forget, but you will get through it." She fingered the angel medallion in the pocket of her uniform. "You'll find a way."
Michael had a rare form of leukemia, a hybrid of ALL and AML, which doubled his resistance to chemo.