We are the parents of three children, three children-in-law, and six grandchildren. We have been blessed with a close family that cares deeply for one another and engages vigorously in the reality of family. Our oldest daughter, Kim, and her husband, John, live in Bellevue, Washington. Their two children, Mary and Ned, are our oldest grandchildren. Mary is into art and music. Ned is into sports and Legos. Our second daughter, Alyssa, and her husband, Kevin, live in Oak Park, Illinois. Their children, Emmett and Evelyn, are the next oldest grandchildren. Emmett is into sports, particularly baseball, and video games. Evelyn is into princesses and dollies of all types. Mark, our son, and his wife, Emily, live in River Forest, Illinois. They are the parents of our two youngest grandchildren, Henry and Caroline. Henry may well be more interested in Legos than Ned. Caroline is beginning to climb and run and make her parents’ lives more interesting.
Each brings joy, love, hope and comfort to our family. Our daily prayer asking for “peace, patience, love, and understanding for one another,” is answered in countless ways every day of our lives together. Whether it is caring texts between siblings, quick phone calls to parents, not-so-pleasant confrontations, or all-too-frequent words of advice, ours is a family that needs that daily prayer as it struggles to make it a reality.
The purpose for telling this story is to give background for our family effort to support pediatric Oncofertility research. This research does not present in the popular press and is seldom foremost in the minds of parents. However, it is a powerful project that promises to change the lives of pediatric cancer survivors as they progress to puberty and eventual pregnancy.
We are a family blessed by friends, extended family, love, joy, and faith. Our journey is not unlike that of many pediatric cancer families. However, it is frequently a story untold.
Our cancer experience began in August, 2013 when our three-year-old granddaughter, Evelyn, experienced flu-like symptoms: upset stomach, fatigue, breathing irregularities, and low grade fever. Alyssa, Evelyn’s mother, is an emergency/critical care nurse and felt that something was amiss beyond the doctor’s belief that Evelyn had a nagging virus. After returning home from a trip to visit us in South Carolina, Evelyn continued to have a cough and persistent fever.
This time, Evelyn’s pediatrician ordered a blood test to determine if there was something more than a virus making her ill. The test showed a significant elevation in LDH, indicating the need for additional testing. Immediately, Alyssa feared some sort of cancer and alerted her sister, Kim, of the test results. Kim, a physician, called us in South Carolina to say that more tests were in order, but that she thought Alyssa jumped way too early to the conclusion that the diagnosis would be cancer. The next test to be conducted would be an ultrasound of the chest.
Alyssa is an aggressive patient advocate who was not willing to wait five days to have an ultrasound at the closest hospital. Therefore, she contacted Lurie Children’s Hospital in Chicago, arranging for an ultrasound to be completed the next day. As soon as the radiologist read the ultrasound, he arranged for Evelyn to go to the emergency department to be connected to the Lurie oncology service. He found a tumor in her pericardium. The tumor was large and was compromising the efficiency of her heart. Alyssa was confused by the immediate referral to oncology, for she knew that many tumors in this location are benign. The oncology service significantly raised the level of anxiety and put into motion a fast paced plan for more specific diagnosis.
As soon as we discovered that a tumor had been detected, we came back to Oak Park from South Carolina. While our presence was not physically needed, our emotional support was what we wanted to express. Extended family, friends, acquaintances, our parish priest, and caring people unknown to us began a prayer storm that gave us consolation and allowed Alyssa and Kevin to do what they had to do to support their dear child.
While the diagnosis at this point was limited to a tumor of unknown cell type, every effort had to be made to clarify the diagnosis. Treatment would depend on the nature of the tumor and misdiagnosis could prove fatal. This phase was not quick. After a biopsy of the tumor tissue, Evelyn was admitted to the oncology unit and monitored continuously for the next several days. Careful testing of the biopsied tissue took a great deal of time. However, the tumor was continuing to cause Evelyn’s heart and lungs to be compromised. Her heart rate was extremely rapid and her breathing was labored. As the hours passed, it was evident to everyone that the tumor had to be removed as soon as possible.
The pediatric cardiac surgeon, Carl Backer, M.D., was ready to take Evelyn to surgery as soon as the pathology report was confirmed. However, her oncologist, David Walterhouse, M.D., was fearful that moving too quickly could jeopardize the treatment if the tumor was malignant. Hours turned to days as Alyssa and Kevin kept watch, waiting for a major surgery to save Evelyn’s life.
On day four, Dr. Walterhouse delivered the most feared news: Evelyn’s tumor was rhabdomyosarcoma, a rare cancer that virtually never presents in the pericardium, where hers was located. It happens, however, that Dr. Walterhouse is one of the premier authorities on rhabdomyosarcoma. The prayers were already working. Dr. Walterhouse would be Evelyn’s oncologist and Dr. Backer, a renowned pediatric cardiac surgeon, would be her surgeon. Grim as the diagnosis was, the plan was in place to treat the disease and return Evelyn to full health.
The next morning, Dr. Backer completed a thoracotomy on Evelyn, removing 100% of the gross tumor. In the course of the six hours surgery, he placed Evelyn on the heart bypass machine to guarantee that he excised as much of the tumor as possible. When Dr. Backer came to the waiting room to give the results of the surgery, he was astounded by the size of the group waiting to hear his report. Alyssa and Kevin encouraged him to share it with everyone and we accepted our responsibility to continue our prayers.
The next several days, Evelyn was in the post-operative critical care heart unit of Lurie Children’s Hospital. Difficult as it was, Alyssa and Kevin saw daily progress in Evelyn’s condition. More importantly, they witnessed the willful, strong, determined personality of their daughter. Since she did not like taking pain medication, she refused to admit to pain. When asked by the nurses to get out of bed, she did so with a sweet little face that showed the pain that she refused to admit. Her heart rate improved immediately; her breathing returned to normal; and her cough became a source of hope for clear lungs. Her condition improved quickly and she was discharged from the hospital in record time.
After only a couple of days at home, alarming symptoms re-appeared. Evelyn was short of breath, spiked a fever, and complained of chest pain. As Alyssa and Kevin rushed Evelyn back to the Emergency Department, the prayers became intense as everyone feared that the tumor had reappeared. Once again, Evelyn was admitted to the cardiac care unit and the oncology team was called. While every indication was that the tumor had not redeveloped, every precaution had to be taken. After more tests, Evelyn was taken to interventional radiology for the fluid that had developed at the surgery site to be removed. Both Dr. Walterhouse and Dr. Backer were convinced that the fluid was a result of the surgery, not evidence of cancer cells rapidly developing. However, until the fluid was examined, no definitive diagnosis could be made.
Our collective prayers were again answered. The experts were correct. The fluid was a result of the surgery, containing absolutely no malignant tissue. The treatment plan for guaranteeing full recovery was back on track. Dr. Walterhouse was comfortable that treatment could begin in a timely manner. The treatment would involve 45 weeks of chemotherapy. In the middle of the chemotherapy, Evelyn would have five weeks of radiation therapy. Grueling as the schedule would be, the rhabdomyosarcoma type and staging predicted a good prognosis.
It was at this time that Dr. Walterhouse shared the Oncofertility research work that is being conducted throughout the country and housed at Northwestern Medical Center. He shared that one of the chemotherapy drugs damages the patient’s reproductive system. As a result, most children need hormone therapy at some time in their lives. The Oncofertility research study targets this phenomenon and holds hope for children to live normal lives, minimizing the need for hormone therapy. He stated that ten years earlier, he could not have this conversation with parents. However, now the hope is rapidly progressing to reality. His colleague, Dr. Yasmin Gosiengfiao, is the primary researcher of the study and an oncologist at Lurie Children’s Hospital.
While the hope for children involved in the study is real and significant, a decision to become part of the research has to be made before chemotherapy begins. At a time when so many decisions of such grave consequence have to be made, making this decision was particularly difficult for Kevin and Alyssa. However, with Dr. Walterhouse’s encouragement, Evelyn became part of the study.
At this juncture, surgery was again needed to implant a “port” into Evelyn’s upper chest for the administration of chemotherapy. It was at this time that the tissue from one ovary was excised for the purpose of cryo-preservation. The protocol for Oncofertility research requires that ovarian tissue removal be completed at the time of another surgery. A separate surgery for ovarian tissue removal is not allowed.
While the port was a blessing, it was a potential site of infection and has to be monitored carefully. For this reason, any time Evelyn developed a fever of 100.5 degrees, or higher, she had to go into the emergency department for tests to make certain the port was not infected. Ports are accessed with a small needle, minimizing pain and maximizing the successful administration of extremely strong drugs.
At long last, October marked the beginning of the 45 weeks that treatment would require. Even though 100% of the gross tumor was excised by the surgery, every precaution had to be taken in case microscopic cancer cells remained. While side effects of treatment seemed minimal at first, within the first couple of weeks, Evelyn began to lose her hair. Convinced that the trauma of hair loss could be minimized, Alyssa and Kevin took her to the beauty salon to have her hair cut short. After a couple of weeks, she went to the same place for a head shave. This was a wise decision. Evelyn was not the least bit self-conscious about her bald head. A trip to Disney World was planned for immediately after treatment.
Even though Auntie Kim and Uncle John began talking of Disney World the minute Evelyn was admitted to the hospital, the Make-A-Wish Foundation became aware of Evelyn’s diagnosis and began planning the event. Having a child qualify for a gift from Make-A-Wish is not something anyone would ever want. Therefore, the emotional baggage such a gift entails is significant. For that reason, Alyssa relegated the planning with Make-A-Wish to Kevin. The plan was for Evelyn, her brother Emmett, Kevin and Alyssa to visit Disney World in the fall of 2014. Auntie Kim, Uncle John, Cousins Mary and Ned, Granny and Pa would meet there for part of the trip.
Treatment progressed on schedule. Each week, Evelyn had some sort of chemotherapy treatment. The first treatment of each triad required a fourteen hour stay in the hospital. The two subsequent treatments were closer to four hours each. In January, Evelyn began radiation therapy concurrently with the chemotherapy. Monday through Friday of each of the five weeks, she went to Northwestern Hospital, received an anesthetic and was given radiation. Beginning each day with wind sprints in the hallway outside the radiation therapy department, Evelyn amazed everyone with her positive attitude and vigorous energy. After anesthesia, however, she had a hard time regrouping and was content to rest.
After daily radiation and anesthesia, everyone was hopeful that the end was in sight. While this was mostly true, Evelyn experienced more therapy side effects as the weeks passed. More frequently tired and nauseated, she was reluctant to venture far from home. Tummy aches became more common and difficult to control. Days after treatment were sometimes spent in the emergency department because of fevers. While the end was in sight, the present realities were more difficult.
In spite of countless trips to the hospital, where the port was always accessed and anesthesia frequently administered, Evelyn never complained. No matter how sick she became, her attitude was positive. Alyssa prepared her well for everything she might experience, giving Evelyn the power to make as many real choices as humanly possible. She never asked Evelyn a question that was not legitimate, nor did she ask permission where it was not possible. She gave Evelyn real choices. Evelyn had a good amount to say about her own quality of life. Little questions like: Where do you want your blood pressure taken? Where do you want your hospital band? Do you want a pill or liquid? Do you want medication for your tummy, or do you think eating will help? These are examples of the many questions Evelyn was asked each day? They seemed to give her control over a life where almost no one has control.
We have frequently marveled at the obstacles historical figures have endured. It almost seems that the more accomplished the leader, the more significant the challenge that person encountered early in life. One could even make the case that those challenges were made into gifts. Our prayer is that Evelyn will choose to turn her considerable challenges into gifts. We think that the prayers of countless people, the love and support of her extended family, and the devoted care of her mother, father and brother are getting Evelyn ready for that launch.
Our family has been richly blessed. This challenge continues to be significant and enduring. However, it can be a source of hope for Evelyn and others. We dream of a protocol where the remnants of childhood cancer are not compromised by infertility. We cannot think of anyone who will be better prepared to be a loving, caring, faith-filled mother than Evelyn. We are sure her counterparts, both boys and girls, will be equally equipped to raise children who will be beneficiaries of their parents’ challenges.
We established the Pediatric Oncofertility Research Foundation (PORF) in February, 2015. PORF is committed to supporting the future fertility of all children who have undergone the challenges of cancer treatment. We invite you to join us.
Tim & Suzanne Brown
…healthy, happy, active
Drawing by Mary M. Brockenbrough