From: BMT Newsletter, November 1994 Issue # 26 - BMTs for Acute Lymphocytic Leukemia. Reprinted by NYSERNet with Permission from BMT Newsletter
Tony Lizza will be 11 years old this month. Almost eight years after he was diagnosed with acute Iymphatic leukemia (ALL) and two BMTs later, it's a day Tony and his family plan to celebrate with extravagance.
"That's a birthday we never thought we'd see," says Tony's mother, Gretchen Lizza.
It's a birthday that's been fought for and won by each member of the Lizza family. Tony's sister, Ali, donated her healthy bone marrow twice to her big brother. And Tony's parents, Gretchen and Carl, made sure he never spent a night alone in the hospital through three relapses and both BMTs. Tony's family moved with him both times from Dayton, Ohio, to the University of Minnesota Hospital in Minneapolis for the BMTs.
The decision to uproot the family to be with Tony was an easy one. Since the disease affected the whole family, Carl and Gretchen knew it would take the whole family to conquer it.
"We all had roles to play," Gretchen says. "It's like being at war. It takes that much out of you."
In 1987, at the age of 4, Tony went into the hospital with a high fever. The diagnosis was ALL and he didn't leave the hospital for weeks until he achieved remission through chemotherapy.
Doctors felt if he remained in remission for three years he'd be fine. Two years and 10 months later Tony relapsed. After more chemotherapy and a second relapse three months later, a BMT was Tony's only hope. Luckily, Ali, 3 years old at the time, proved to be a perfect match. Neither Gretchen nor Carl thought twice about volunteering their second child to save their first.
There's not a lot of risk for the donor," Carl says. "There's very little pain for something to be very proud of."
The Lizza family (above) in 1990 at Tony's two-year checkup after the first of his two transplants. (At right) Tony in 1993, one year after his second transplant.
After a few months in Minnesota, Tony and his family headed home again. After two years of remission Tony relapsed a third time. The third relapse took its toll on the entire family.
Gretchen said the decision to put Tony and the whole family through the physical and emotional pain of a second BMT was the hardest decision they've ever had to make. But this time Ali volunteered.
"Daddy, I'll give Tony my blood again to make him better," Carl remembers Ali saying.
Once again the Lizzas picked up, packed up and headed to Minneapolis.
"A BMT is pretty hard," Tony says. "You get all that medication flushed into you and it's hard to keep taking it. But once I started it I knew I had to finish lt."
The three days on, three days off shifts with Tony that Carl and Gretchen shared became exhausting. They went to one day on and one day off so the other could try to sleep. They changed their outgoing message on their answering machine to update friends and family about the transplant. One night 130 people called to check on the family's progress and leave messages of hope.
Tony knows his family made a difference. "When they were there I hardly noticed getting shots," he says.
After weeks of barely eating enough to survive, Tony wanted Red Lobster popcorn shrimp and breadsticks from Pizza Hut. After four exhausting months the family headed home. Two years into the current remission, life is almost normal for the Lizzas in their new home in Voorhees, N.l. Like most brothers and sisters Ali and Tony bicker, fight and carry on.
"I think it's kind of nice she donated," Tony says of Ali. "But nowadays she's kind of pesky."
The best part is that he's not sick anymore, says Ali, now 7. Even though she missed her friends while she was at the hospital with her brother, at least she got to see and be with him all the time. "Now he always plays with his friends," Ali says.
"They're normal kids. They fight, they scream, they steal each other's stuff," Gretchen says. But you've never heard a mother so happy to hear the sounds of sibling rivalry.
Ali has never known Tony without ALL. And her parents recognize her life has been unstructured and disrupted. But they also never 'knew what an impact donating would have on boosting her esteem and her sense of purpose.
Every year between Christmas and New Year's the family sits down each night for a week to focus on one value per night. They discuss values such as love, cooperation, leadership and sharing. Last year Ali surprised the whole family while discussing the value "purpose."
"My purpose is to give bone marrow," she announced.
Everyone quickly reassured her that while that was very significant, her purpose was more than that.
"lt shocked us, but what better purpose than to give someone the gift of life" Gretchen says, "That's pretty significant for a 7 year old."
Though Tony is in school and plays baseball like any other pre-teen boy, Gretchen and Carl are still unwilling to completely believe Tony's made it. While they may have defeated ALL, eight years of uncertainty and fear are harder to overcome.
"We live in limbo," Gretchen says.
"We're a family of three plus one," Carl says. "Tony's our special guest, but we're never sure how long he'll stay."
But the family now has a new focus. Instead of cancer fighters, Carl said they're in the "memory making business" now. He counts each day of their father-son bowling league as a special treasure.
Gretchen counts birthdays. Carl measures progress in Christmases his family has together. And Tony... he dreams of being a professional baseball player, or maybe a policeman or an actor.
In the meantime, there's another birthday at an arcade that's just days away and close enough to almost count on.
1982: Twenty-five-year-old Steven Keogh of Port Washington, NY, had been feeling tired for weeks, but his regular doctor could find nothing wrong.
When Keogh showed up to install some cabinets for a local hematologist, however, the doctor was suspicious. "My glands were really swollen," Keogh recalls. "As I was installing the last piece of furniture the doctor said, 'Why don't I run some tests on you just to make sure my equipment is still working Maybe you have hepatitis."'
Keogh didn't have hepatitis; he had acute lymphocytic leukemia (ALL). "They admitted me to the hospital and gave me some methotrexate," Keogh says. "By the next morning, the swelling in my Iymph nodes was down and I assumed everything was fine."
But the doctors told him that acute Iymphocytic leukemia was a difficult disease to cure. "I refused to give up. I told them, 'Let's rewrite the book."'
For the next 11 weeks, Keogh underwent a series of chemotherapy treatments, in the hospital two weeks and out for two weeks. "My friends kept calling and I tried to comfort them. 'It's not a big deal,' I told them. This is just a vacation."'
When Keogh relapsed in December 1984, the doctors told him his only hope was a bone marrow transplant (BMT). "My brother and sister were tested as possible donors, but neither matched my marrow type," he explains. "At that time, there wasn't an organized system for finding an unrelated donor, so I agreed to have an autologous BMT and be my own marrow donor."
The day after Christmas, Keogh entered the hospital. For the first three days he underwent radiation, followed by 10 days of chemotherapy. Then the bone marrow that had previously been harvested from him and stored was reinfused.
"In the beginning I could barely move," Keogh recalls. Everything had to be done for me. But as soon as I was able, I got up and started moving around. I had a set of exercise steps put into the room so I could keep up my energy and my muscles wouldn't atrophy. I knew from previous hospitalizations that Iying around only makes you weaker."
Nearly three months after being admitted to the hospital, Keogh was discharged. "My blood counts were still low, so I had to stay near the hospital for more than a month. Back then, they didn't have all those drugs they use today to boost your blood counts more quickly."
"I found that what helped most during the BMT to reduce stress and relieve pain was using visual imagery and direct centering," Keogh says. "There's no substitute for the power of the mind."
"I refused to give up. I told (the doctors), 'Let's rewrite the book."' Steven Keogh
Today, nearly 10 years later, Keogh feels fine and continues to work as a cabinet maker, mountain biking in his spare time. In January, he'll get his pre-med degree, and plans to become an electron microscopist.
1993: While Steven Keogh studied to become an electron microscopist, a young woman on the opposite coast was having problems. For four months, 26-year-old Michelle Weedin of Sunnyvale, Calif., had been experiencing severe pain. "My legs ached, my arms ached and my rib cage hurt," Weedin recalls. "Sometimes the pain would be so bad I couldn't move. Then it would go away for a couple of days."
When Weedin's roommate took her to the local hospital, they advised her to take some ibuprofen. But when Weedin returned with the same complaints of pain and a green pallor to her skin, the doctors performed a bone marrow biopsy. She had acute Iymphocytic leukemia (ALL).
Weedin had just graduated from San Jose State University and was working as a pre-school teacher. "I was scared when they told me," she says, "but when I saw the tears in my mother's eyes, I knew I had to be strong for her."
For the next several months, Weedin underwent several rounds of chemotherapy and one radiation treatment. In November doctors suggested a bone marrow transplant.
"They tested my brother as a donor and he wasn't a match," Weedin says. "I wasn't worried. I knew that the Lord would provide something for me - if not my brother, then another answer."
A search of the National Marrow Donor Program registry turned up a few possible donors, but none was a perfect match. The doctors recommended an autologous bone marrow transplant, using stem cells collected from her circulating blood, rather than bone marrow.
"In May, I went into the hospital as an outpatient for five days, four hours a day, to have my stem cells collected. I was admitted to the hospital for the transplant in July."
During the next four weeks, Weedin underwent chemotherapy, radiation and a stem cell transplant. "I didn't find it really difficult - I have a hefty spirit and I prayed a lot. What drove me really crazy was the isolation room. I couldn't leave it and I got really bored." Visits from her parents on weekends, as well as cards and letter from friends, helped to relieve the boredom.
One week after her discharge, Weedin began working as a volunteer at her church. "I can't handle sitting around and I felt well enough to do it," she says. In the near future, she'll begin teaching a class at the church school.
Her advice for prospective BMT patients: "Take it a day at a time, and if you have any faith in God, keep focused on it. That's what really helped me."
By Lisa Powell
In 1977, when I was 11 years old, I was diagnosed with acute Iymphocytic leukemia (ALL). I achieved a remission and underwent three years of chemotherapy, looking forward to that magic 5-year mark when I would be considered cured. Four years and nine months later I relapsed.
Fortunately, I attained a good remission that lasted nine and a half years. During those years I attended college, earned a degree in finance and international business, married my husband Rick, and began working as a claims adjuster at an insurance company. Life was great.
In the fall of 1991 I began getting excruciating headaches. I felt listless and sick all the time. The thought never crossed my mind that the cancer had returned. I thought leukemia was a thing of the past, something I had put behind me.
When my doctor told me I had relapsed, I was devastated and felt betrayed. But I told myself I had beaten leukemia twice before and could do it again. At age 26, I underwent chemotherapy again and immediately got into remission. However, my doctor told me my only real chance for a cure was a bone marrow transplant.
Deciding to undergo a BMT was the hardest decision of my life. The odds of survival were not in my favor and the fact that I would be infertile and could never bear a child of my own following the transplant tore me apart. I finally decided I had too much to live for and too much more to accomplish to give up. I agreed to a BMT.
Unfortunately, no one in my family matched my marrow type and could serve as my donor. One week after contacting the National Marrow Donor Program, an unrelated donor was found. On Sept. 3, 1992, new life was transplanted into me. On Oct. 19, my husband's birthday, I was released from the hospital and spent three months recuperating in an apartment close to the hospital.
Today I am considered cured of this dreadful disease, thanks to a wonderful man in California who donated his marrow to me, the transplant team at Shands Hospital and my oncologist who gave me the strength and encouragement to proceed. Granted, life was not rosy during my hospitalization and recuperation I had lots of ups and downs with infections and graft-versus-host disease. I still have some weakness in my legs and knees but I but hope to resolve that problem by working out every day.
I have been back to work for a year and am exuberant. My hair grew back thicker after the BMT and best of all, my new immune system is in peak condition - I hardly ever get sick. Other than minor skin rashes due to graft-versus-host disease, I feel healthy as ever.
I believe the secret to my success was the support I received from my husband and parents - they were incredible. There wasn't a moment during the day when I was alone - they were always there to keep my spirits up.
I found it helpful to get ready emotionally for the BMT by reading books on imagery and visualization, developing a positive attitude and praying. Each night before I retired, I would envision the radiation and chemotherapy attacking the cancer cells and then I would pray. I tried not to dwell on the negative or the possibility of not having a successful BMT. Today, I take one day at a time, live for today, and appreciate life more than ever.
In 1989, 41-year-old Carol Peters didn't know what leukemia was. Five years, four rounds of chemotherapy and one bone marrow transplant later, she and her family are still recovering from the effects of the disease.
"My ordeal began when I went to the doctor with a low grade fever and swollen glands," Carol says. "I thought it was mumps or mono. There was no history of cancer in my family. Cancer was the furthest thought from my mind."
As her husband Rich sat in the hospital reception area waiting to drive Carol home, two doctors entered. "I overheard them talking quietly about 'Peters' and 'leukemia,'" Rich recalls. "I was stunned. I was sure Ihey were talking about someone else."
During the next four months, Carol underwent three rounds of chemotherapy, each lasting 20-21 days, in an effort to get into remission. Each attempt was unsuccessful. Finally, on Nov. 8 she achieved a remission. "I thought the nightmare was over," she says. "I was ready to go home and get back to a normal life."
Reality quickly set in, however, as the doctors explained that her remission might last only a short time, and that a bone marrow transplant was her best hope for a cure. "The biggest blow came when they told me that, given my medical history, I had only a 10 percent chance of a cure following a BMT."
It was a difficult decision, but Carol decided to go for the cure. When she learned that two of her brothers were a perfect match and either could serve as a bone marrow donor, her spirits lifted. "I knew the Lord had plans for me."
On January 11, Carol entered Alta Bates - Herrick Hospital in Berkeley CA for her BMT. Rich was at her side every day. "I never thought she would die," he says. "I tried to encourage her and that helped me give encouragement to myself."
Three months later, Carol returned home. "I cried," Carol says. "I wasn't used to home. I was really scared that something might happen and the hospital staff wouldn't be there to help me. It was also a weird experience to go back to a home that I had not been in charge of since August."
Rich shared Carol's nervousness at leaving the safety of the hospital. "The first couple of times I cleaned out her Hickman catheter (central venous line) my fingers got black and blue from trying to get the air bubbles out of the syringe. Her life was in my hands and I thought the slightest mistake might kill her," he remembers.
As difficult as the experience was for Carol and Rich, the BMT took its toll on their three children as well. "For the first few years after the BMT, everyone walked on egg shells, not knowing if I would stay alive," Carol says. "Now we can talk about it more openly."
"I was a stay-at-home mom from the day my first child was born," Carol says. "The children were used to having me around - they even called me in the hospital to help settle their arguments. Although they could cook, do the wash, and keep up with their school work, they felt they had too much responsibility thrust on them at too young an age when I was hospitalized. My oldest daughter says she wasn't initially told what was wrong with me. She's angry about that to this day."
"I was a stay-at-home mom from the day my first child was born. The children were used to having me around they even called me in the hospital to help settle their arguments." Carol Peters
"It's not how we meant it to be," Rich says. "But things happened so quickly, I had all I could do to focus on getting Carol well."
"A nurse finally convinced me that Rich needed some time off from the hospital - he was going under," says Carol. "I wanted desperately to have him there every day, but she was right. He needed the break. Taking care of me and the family was too much for one person to handle." "It was like being in jail," Rich says, "but I knew it was worse for Carol."
Carol recalls an incident in the hospital when her children visited and her 10-year-old son refused to sit on her bed "I knew something was bothering him," she says. "We were always very close. It wasn't like him. Finally, he began to cry. He had asthma as a child and I was always taking him to the hospital. Somehow he got the idea that his asthma caused my cancer. While the older girls had support groups they could attend to help them deal with their questions and fears, there was nothing available to help a 10-year-old boy deal with the experience."
Today, Carol spends her time raising her children, speaking for the Wellness Community, working with her husband Rich on the church parish council and helping with fundraisers and food drives for the needy. "I still have some pain in my joints, probably from the graft-versus-host disease," Carol says, "but I prefer to try exercise or physical therapy to relieve the discomfort rather than go back on medications."
What helped the Peters most as they dealt with the BMT experience? "One of the hardest things for both of us to learn was to let other people help us," Rich says. "We weren't used to having other people do things for us. We always assumed there would have to be a payback. But people would take the kids shopping for school clothes, take them to the show, etc. and refuse money when I offered it to them. Finally we had to accept the fact that we could never repay everyone for their kindness - there were too many people helping us for that - and just let it happen. It made a big change in our lives to realize how many friends we really had."
"It meant a lot to me to have my family provide moral support after the BMT," Carol says. "I was bloated from the prednisone I took to control graft-versus-host disease and I thought I looked ugly. But all three of my kids kept telling me I looked fine. The kids were in sports and wanted me to be at their games, regardless of how I looked. 'You're coming, we're proud of you just the way you are,' they said. That meant a lot to me."
"I found that you have good days and bad days," Carol says. "On the good days, try to get the reserves you'll need for the bad days. Take in that sun, absorb that sky, and use those reserves when the bad days come along. That, and faith in God, helped us get through the BMT experience."
The electronic version of this document was created by NYSERNet, Inc. through a grant funded by the New York State Science and Technology Foundation as part of the Breast Cancer Information Clearinghouse.