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Stevens' Battle With Lymphoma
Only months after giving birth, at a time when she should have been simply enjoying the role of new mother, Julie Stevens, at age 19, was dealing with a diagnosis of cancer.
Shortly after her son Erics birth in February, Julie began to feel ill. She had no appetite, swollen lymph nodes in her neck, fevers and night sweats. Life became misery, with spiking fevers that resulted in several trips to the hospital emergency department. Doctors at first thought Julie might have a breast infection, which happens occasionally in nursing mothers, and prescribed antibiotics.
But antibiotics didnt help. Julie could barely drag herself to take the baby to his next regular visit with his pediatrician, Dr. Naseem Deen, who was also Julies pediatrician when she was a child. Dr. Deen, worried by Julies symptoms, suspected mononucleosis and referred her to Dr. Alejandro Murcia, a specialist in infectious diseases. Dr. Murcia admitted Julie to Manchester Memorial Hospital, and a series of tests began.
It was at the hospital that Julie first met Dr. Jeffrey Wasser, who would become her oncologist. Dr. Wasser prepared Julie for a possible diagnosis of cancer, and scheduled a CAT scan, bone scan and blood tests. Those tests, in addition to a biopsy of her lymph nodes, confirmed the diagnosis a form of non-Hodgkins lymphoma, an aggressive cancer of the bodys lymphatic system. "I was devastated," Julie recalls. "All of this happened right around Mothers Day. I spent my first Mothers Day in the hospital, thinking, I have a newborn baby and cancer."
Julie was a single parent, living in Manchester with her own parents, who had converted the lower floor of their home into a two-bedroom apartment for her and the baby. She asked Dr. Wasser for the complete truth about her condition, and she also insisted on knowing the statistics for surviving the type of cancer she had.
"Basically, I wanted to know if I was going to live or die," she says. "Dr. Wasser told me it didnt look good because it had spread very quickly. He really doesnt like to give statistics, but I kept asking until finally he told me my chances were about 30 percent."
Julie had a high-grade aggressive lymphoma that is fairly uncommon in young adults, Dr. Wasser says. Surviving cancer, he notes, involves the right treatment, the right attitude on the part of the patient and sheer chance for most people. "While two people can have a similar disease, the patients, their family dynamics and their emotional strength differ from person to person. But we do see patients at their most courageous here."
For a couple of weeks, Julie was convinced that she would die. A priest who was a friend of the familys came to her house to perform the ritual of anointing of the sick. "I was scared, but that was a turning point for me," she remembers. "I have a lot of faith, and I said I was going to fight this."
Her first dose of chemotherapy was administered the very next day, and Julie felt results almost immediately her swollen lymph nodes went down, and she seemed to have more energy. Her chemotherapy lasted from May to October, and part of the treatment involved taking the steroid prednisone, which made her hyperactive and feel out of control. "Id be up at all hours of the night doing housework or ironing," she says. "I gained a lot of weight. But I didnt get that sick from the chemotherapy. I was able to ignore the nausea I felt."
Many people offered to help take care of Eric during this time, but Julie said taking care of the baby is what helped her get through her treatments. By October, she seemed to be cancer-free, and she welcomed the holiday season with joy.
The following January, however, the nightmare began again when her symptoms returned. "I knew," she says. "After you get the diagnosis the first time, you get kind of in tune with your body. I found the lymph node myself."
When a patients lymphoma recurs so quickly after treatment, a procedure called stem cell transplantation often is considered. Stem cells are the immature cells from which all blood cells develop. There are two methods of stem cell transplantation autologous and allogeneic.
In an autologous transplant, the patients own stem cells are removed from his or her bone marrow and are treated with drugs to kill any cancer. In an allogeneic transplant, stem cells are harvested from a donor whose basic cell type is almost identical to the patients, usually a brother or sister.
In both types of transplantation, the stem cells are carefully frozen and stored. The patient then receives high-dose chemotherapy and sometimes whole body radiation treatment. This destroys remaining cancer cells, but it also kills all or most normal cells in the bone marrow. After therapy, the frozen stem cells are thawed and returned to the patients body in a blood transfusion.
The best option for Julie was an autologous stem cell transplantation at Yale-New Haven Hospital, one of the few medical centers in the area that perform this procedure. "We usually do autologous stem cell transplants (as opposed to allogeneic) when we can," Dr. Wasser says. "That way theres no host reaction, and its easier for the patient. Transplanted cells from another donor can actually fight against the recipients cells."
Julie was hospitalized for a month, and the separation from Eric was as painful as the effects of the powerful chemotherapy she endured, which caused her to lose all of her hair. Her parents brought him to see her on weekends, and his father brought him one day a week as well. She has poignant photos of herself in the hospital, holding her year-old baby near her bald head, a beautiful smile on her face.
In May her treatment was complete and her cancer was in remission. Overjoyed and energized, she signed up for a 13-month medical assistant program at a local business school. But her happiness at going to school and raising her son came to an abrupt halt a little more than a year later.
That summer, Julie began to feel more tired than usual. She wasnt eating as much and she had a swollen jaw. Thinking she had an abscessed tooth, she went to her dentist in July. "He did some x-rays and there was no abscess," Julie says. "His office is in the same building as Dr. Wassers. After the x-rays I knew, and I went right up to see Dr. Wasser."
Tests shows that the cancer was extending down Julies face and neck. All Julie could think about was being with her son, who was now two and a half, so arrangements were made for her to have chemotherapy at home. But her fevers raged out of control, and lymph nodes in her groin grew enlarged, something that had not happened before.
Julie returned to Yale-New Haven in November for surgery to biopsy the groin lymph nodes, something she was dreading after everything else she had been through. She prayed hard in the hopes that the surgery would not be needed, and then something surprising happened. "Through everything, my family and friends have always prayed for me," Julie says. "I just felt as if something was going to happen. I was on the table for the surgery when they stopped the procedure. I had a big smile on my face. They told me that whatever had been there now was gone. My doctor called it his Thanksgiving miracle. I didnt need the surgery."
But because her own stem cell transplantation failed, Dr. Wasser discussed with Julie an allogeneic stem cell transplant. Julies family was tested to determine if they were appropriate donors for an allogeneic transplant, but no match was found among her relatives. Julie was faced with the option of using stem cells from an unrelated donor, but the complications associated with this were significant. "I didnt know what to do," she says. "I prayed about it and really searched inside."
Julie finally decided to go on the recipient list at Yale-New Haven for the unrelated donor transplant, and her whole family again went to be tested with newer techniques. It was then that a second surprise occurred. "It turned out that my older brother was a perfect match for me," she says, still in awe at the turn of events.
Her brother, who was 26 at the time, readily agreed to donate his stem cells for the transplant. In order to prepare for the procedure, he had to be injected daily for a week with a drug that encouraged his bones to overproduce blood cells. The injections made his bones and muscles ache, giving him a sense of what his sister was going through. His stem cells were harvested and frozen, and Julie prepared for what would be her most difficult treatment yet.
In January, for eight days in a row, she had high-dose chemotherapy and full body radiation. It was the first time shed had radiation therapy. "The chemotherapy was bad, but the radiation made me sicker than I had ever been," she recalls. "It seems kind of like a dream now. Friends came to see me, but I dont remember. And it was so hard being away from Eric. He understood this time, and he didnt like me being away from him."
She saw Eric once or twice a week, and his daycare provider let him call her every day. But Eric just wasnt himself, and Julie was determined to get back to him as soon as possible. Just three weeks after receiving her brothers stem cells, her blood count went up, which was an encouraging sign. If she could keep food down, she could go home.
"I forced myself to eat a peanut butter and jelly sandwich so I could get out of there," Julie says with a smile. "I really believe prayers helped me a lot. We got prayer cards from friends as far away as Canada. There was even a group of monks in Pennsylvania who were praying for me. I got a card from a woman in Arizona who I didnt even know she was friends with my fourth-grade teacher who told her about me. It was so nice to have that kind of support. As much as this world can seem so mean and cold, people do care."
Eric celebrated his third birthday in February with his little friends at a local restaurant while his mother recovered from her second transplant. Julies only regret was that she could not attend the party. "Too many germs," she says ruefully. "But later we had a special little party just for me."
Julie was thrilled in May to be able to participate in the wedding of her younger brother even though she had lost so much weight that an entirely new dress had to be ordered at the last minute. Her dreams blossomed again later in the year, when she was able to return to school. She will graduate in January, in the same month that she turns 23. "Im planning to continue going to school," she says. "I want to become a nurse or a medical assistant, someone who helps people with cancer."
The stem cells from her older brother, who is single and lives in Manchester, seem to be working for her. "Things look really good, and I have a lot of faith," she says. "I wrote my brother a card and told him he was my hero. It was very emotional for me. I told him he did the greatest thing for me he saved my life."
Her parents, too, have given Julie gifts beyond compare. "I cant imagine how I could have raised Eric if I had faced this by myself," she says. "They did everything right. They knew when I needed help and when I needed space for myself. Theyve done so much for me."
Julie, in turn, wants to pass the gift of love and support on to others. She recently heard about a friend from high school who was diagnosed with leukemia. "A lot of our friends said they wanted to call him but didnt know what to say. The first thing I did when I heard was pick up the phone. As it turns out, he ended up having a stem cell transplant, the same as I had."
Ever the optimist, Julie says some good has most definitely come from her experience. "When youre diagnosed with something like this, you do look at the trees and the grass and the flowers differently. I used to think, This is such a nice world, and I never really noticed it until I was dying. It does give you perspective on life. Nothing really stresses me out any more. The only thing that would really stress me out is if I got sick again."
Julie has a special place in her heart for Dr. Wasser, who performed many acts of kindness for Julie in addition to delivering superior medical care. "Thats why I love Dr. Wasser hes done so much for me and Eric." She looks at her son and smiles. "Who knows, maybe Eric will be the next Dr. Wasser. Hes been through all of it."
Through her experience, Julie has kept her positive outlook and attitude. "I really believe things happen for a reason," she says. "I was devastated when I was pregnant at 18, but Eric was my inspiration to keep going through it all. He needed his mom. And hes the most precious gift Ive ever had, because with all the treatments Ive been through, I probably will never be able to have another child."