This feature, the second in a three-part series detailing a teenage cancer experience, discusses an event from 2004 through the eyes of a 10-year-old sibling. Read part one: Cancer diagnosis shatters senior year.
Remission: it’s a simple word, but it means a lot to someone who just spent his senior year of high school battling a rare childhood cancer.
When my older brother, Scott Regnerus, entered remission after his successful treatments, he set out to regain his normal teenage life. He planned to move back to Fresno, CA ? where my family lived prior to our three-year stay in the state of Washington ? and live with Jonathan DeGroot, his best friend since elementary school, while attending college in the city.
Scott’s plans did come to fruition, although they would find an abrupt halt after about a year and a half. He began his new life in his “bachelor’s pad,” as he and DeGroot called it, and enrolled in a number of classes. He did all of the things an independent, healthy, cancer-free adult would do.
As Scott and my mother worked in the yard of our new house in Fresno on President’s Day weekend, my mother noticed that Scott seemed to tire easily, so she decided they should take a break inside. While she poured coffee for both of them, Scott casually told her about some large bruises he had discovered on his thighs and calves.
“I must have a vitamin or mineral deficiency,” he said. My mother, however, resigned herself to another explanation. Drawing on her knowledge that secondary cancers could stem from chemotherapy treatment, she suspected a much graver source of the bruises: leukemia.
With a desire to speak to a doctor to allay or confirm her fears, my mother drove around the block and used her cell phone to call what is now Children’s Hospital Central California and spoke with an oncologist ? a cancer doctor ? about her suspicions. The doctor concurred, requesting that Scott come in the next morning for tests.
Worries overwhelmed my mother’s mind: “How will Scott react if he is told he has cancer again? Why him, after all he’s been through, when only one-half of a percent of patients will get a secondary cancer from the chemotherapy drugs? What can I, as his mother, do to help him? I feel helpless.”
My mother called Carolyn DeGroot, Jonathan’s mother, and asked them to come to the hospital for support in case of a cancer relapse. Without voicing their notion to Scott, they arrived at the hospital the following morning for testing.
Tests reveal unfavorable condition
After completing routine blood tests, the doctors extracted bone marrow from Scott?s spine ? a painful but necessary procedure. The results from the blood tests hinted at a form of leukemia, but the doctors sent the marrow to the Mayo Clinic and two other locations for a more specific diagnosis.
The group went out to lunch following the tests, attempting to relieve their minds of the unfavorable news. Soon Scott would be isolated again and unable to go out in public.
Within a few days, the examinations of the bone marrow confirmed the results of the blood tests: Scott had chronic myelomonocytic leukemia (CMML). Twenty months after the chemotherapy treatment that cured him of his first cancer, Scott found himself in the grip of his second. The only way to survive this battle, the doctors said, was for Scott to receive a bone marrow transplant.
After learning the news, my mother called the doctor in Seattle who treated Scott during his first cancer and informed him of the recent diagnosis. The doctor, knowing that 0.5-1 percent of chemotherapy patients develop a second cancer from the treatment, was devastated to find that Scott fit the statistic. He suggested testing the blood of my siblings and I as soon as possible to find a match to Scott for the transplant.
There and back again
It now became time for my parents to tell my twin sister Ashley and I about Scott’s condition. We both cried when we heard the news, because there was nothing we could do to help Scott. We just knew that once again, our mother and Scott would leave for Seattle for long periods of time while we stayed home with our father and our older siblings.
Life changed after that poignant night, but not as much as one might expect. Whether out of unwarranted confidence or childhood ignorance, I never expected the disease to triumph in Scott’s battle. However, because I was 10 years old at the time, I could barely comprehend the gravity of the situation. But I was confident that out of four siblings, one of us would match Scott. After all, the doctor in Seattle said siblings have a 25 percent chance of matching perfectly.
The doctor recommended that my mother and Scott travel to Seattle for the bone marrow transplant at the Fred Hutchinson Cancer Research Center together with The University of Washington ? the two treatment centers that perform the most bone marrow transplants in the world.
After 20 months away from Seattle, Scott returned to the rainy metropolis for his second bout with cancer; the grey skies matched their dismal moods. They were returning to a place they prayed they would never revisit, and tried to garner the strength to persevere through the treatment processes again.
Before the doctor had received the results of the siblings? blood tests, he decided to also test my mother and Scott?s father, Rod Regnerus. He knew Scott needed the bone marrow transplant soon to avoid reaching the acute stage, so he wanted to dodge a delay in going to the National Marrow Donor Program if none of the family members matched.
The results of the siblings? blood draws came three weeks later. The four of us matched each other perfectly, but not one of us matched Scott.
?I was so confident that one of my children would be a match for Scott,? my mother said. ?I couldn?t believe that we would have to go through the registry with its long process and unknown results. The greatest fear with cancer is the unknown.?
The next two weeks agonized my mother and Scott, as thoughts of the outcome seized and disturbed their minds: What would this treatment be like, and how would his body respond to it?
The doctors found a match, however, and it came from a very unlikely source.
To read the first part of this series, visit Cancer diagnosis shatters senior year.