Imagine facing the devastating diagnosis that your child has a rare condition that is fatal if left untreated….twice. Parents Julie and Brandon faced twice the heartache when both of their children, Luke and Molly, were diagnosed with a type of cancer called, myelodysplastic syndrome.
Connor Dykes, now seven years old, is a ball of energy. From the moment he wakes until his head gently rests on his pillow, he’s nonstop motion – laughing, singing, asking inquisitive questions, and alternately playing and fighting with his older sister Joselyn. In other words, he’s a lot like any other first-grader.
When he was six weeks old, Connor became restless and started throwing up and crying inconsolably. Nothing seemed to comfort him. Then within minutes the entire left side of his head and left eye became swollen. He was immediately taken to the hospital where he was given a CT scan that showed he had a brain tumor the size of an adult fist. The mass took up his entire left hemisphere and emergency surgery was necessary.
After making it through surgery successfully, he was then diagnosed with a rare Stage IV Multiforme Congenital Glioblastoma only three days later. Conner then went through five months of chemotherapy, and became the youngest person ever at the University of Minnesota Amplatz Children’s Hospital to receive an autologous bone marrow transplant. The bone marrow transplant was a success, as was the chemotherapy, and now Connor is considered cured.
Today, Connor has some developmental disabilities, but he is progressing daily. These are very small prices to pay to have their son happy and healthy. His family is thankful in the strides in medical research for their son’s life.
In the summer of 1999, Emma was a toddler with a cough that prompted her parents to bring her to the doctor. A chest x-ray revealed a tennis ball-sized tumor. The family went straight from the radiologist to the University of Minnesota Children’s Hospital, Fairview.
During Emma’s hospital stay, she underwent surgery to remove the mass, then three rounds of outpatient chemotherapy. Today, Emma is a cancer survivor who loves basketball and music. She plays the clarinet in the school band and is also learning to play her sister’s trumpet. She also wants to start piano lessons.
While the experience isn’t one they’d wish on anyone, her parents do appreciate the moments of bliss that still hit them when they consider how bad things could have been. Her mother gives an example: When she dropped Emma off for her first day of preschool, she struggled not to cry. Some teachers, passing by her in the hallway, saw the tears. “The teachers said, ‘Oh, are you having a hard time?” she recalls. “And I said, ‘No, I’m just so thankful that she’s going to preschool.’”
Jacob was born with Down syndrome. Individuals with Down syndrome are up to 20 times more likely to develop leukemia than the general population. Leukemia peaks with newborns and again between 3 and 6 years of age. Jacob was 4 when he was diagnosed with Acute Lymphoblastic Leukemia (ALL).
Jacob’s journey with ALL began In February, 2008. After watching her son become more and more listless, he was taken to an Urgent Care, where the doctor diagnosed an ear infection. Two days after Jacob finished his antibiotics, his symptoms returned. He was listless, running a fever, crying and irritable, and he had no appetite. Another ten days of antibiotics didn’t help, and now he had new symptoms – night sweats and a pin prick-like rash. The symptoms he had, including the rash, pointed to the possibility of leukemia. They ran a full blood count and it came back abnormal.
During the first six months of treatment, Jacob was instructed to remain at home to avoid infections and illnesses. Because he was content at home, the restricted lifestyle did not impact the family much. “Cancer didn’t change our physical lives that much,” his mother says, “but it changed our lives emotionally. Every day I was scared that Jacob would be taken from me. I never cried like that before.”
While he could not articulate how he felt, Jacob let his mother know when he wasn’t feeling well. “He would suck his thumb and lean on me,” she says. “That’s how I knew he needed to be held and rocked.”
As his mother reflects on the journey that Jacob and their family has been through, she says, “When Jacob entered our world seven years ago, we learned so much about Jacob – how his mind worked. However, when the cancer entered into the scene we learned so much more – how the body worked.” Due to a different genetic make-up, children with Down syndrome who develop leukemia receive a modified treatment protocol than other children diagnosed with leukemia.
Jacob will be finished with treatment in June, 2011, and only needs monthly check-ups to watch for cancer markers.
“I really didn’t understand my diagnosis; I was very hungry and just wanted a doughnut to eat,” recalls 11-year-old Mathew about the day he learned he had Burkitt’s lymphoma, a cancer that grows in the lymphatic system. “I was also totally excited that I would get to ride in an ambulance.
This refreshing and pragmatic reaction is indicative of how Mathew has handled his often harrowing journey with childhood cancer. Now on the cusp of his fifth anniversary of diagnosis, a milestone that recognizes him as a “survivor” of childhood cancer, Mathew, along with his family, is now redefining what “survivorship” means to him and to them.
What still remains unknown is the degree to which the protocols used in treating Mathew’s disease may affect his future well-being. Going forward, Mathew will be undergoing checkups at the Long-Term Follow-Up Clinic at the University of Minnesota to help his family address future medical, neurocognitive, emotional and social needs. Doctors and his family will be monitoring Mathew’s growth, bone density, signs of a hypo-thyroid, glucose levels and sun exposure.
“I am not a cancer survivor. I am more than that; I’m a thriver,” says Mathew. Thrivers like Mathew meet each challenge and go beyond it, reaching back to help those who have not come as far.
His mom recalls a feeling of helplessness when Mathew was released. “We were happy that Mathew’s health was responding favorably but also felt badly for those whose children were not getting better. We were helped and humbled many times on our journey. Now we want to be able to give back a piece of what we received along the way.”
At age 14, Zach Sobiech was diagnosed with osteosarcoma, a bone cancer which mostly strikes children. In May 2012 his doctors informed him that he had up to a year to live. During that time Sobiech recorded the song "Clouds" about his battle with cancer, and released it as a YouTube video in December 2012.
Sobiech died on May 20, 2013 of complications from osteosarcoma, at his home in Lakeland Minnesota, he was 18.