Brandon Berglund's mother says, "I remember standing before the first CAT-scan of my son's brain. I was shocked that the suspected tumor was so large and so recognizable. A sudden darkness, terror, and pain overwhelmed me. Our lives would be painfully and irrevocably changed forever."
During the two months following that diagnosis of malignant brain cancer, five-year-old Brandon underwent seven surgeries. The next ten months involved intensive chemotherapy and frequent hospitalization. Another surgery for additional tumor removal left Brandon with paralysis down his left side. There was a short reprieve, then the devastation of a new tumor in the spinal cord, which was treated with radiation. Another short reprieve, and more bad news, as a new large tumor grew in the brain.
With treatment options quickly running out, Rita and Brad Berglund took their son to California for an autologous bone marrow transplant, followed by additional specialized radiation.
How does a child survive all that? How does a family survive? One life-threatening crisis after another thoroughly traumatized all of them, including Brandon's younger sister Brianna.
Today, Brandon has been tumor-free for over ten years, after his total of 17 surgeries. He gets around with a tall walking stick and when facing longer distances drives his red power scooter. He is now mainstreamed in a local school. His mother reports, "He loves to laugh and tell jokes. Despite his disabilities, Brandon is happy to be alive."
Back in 1989 the Berglunds had just moved to Denver so that Brad could join the ministerial staff of the Calvary Baptist Church. They had barely learned the names of a few members of the congregation when their son fell ill. Due to the public and religious nature of Brad's work, there were many issues they had to work through.
Together, they made a commitment to be as honest as possible with each other, the family, and their congregation. Rita says, "Brandon's illness was not just a medical journey. It became a spiritual journey, as well. We had to re-educate ourselves about what it means to be a human being, to watch a child suffer, to feel helpless, betrayed, and at times overwhelmed by despair. We learned the value of living with powerful unanswered questions."
The Berglunds created a support system of family, friends, teachers, doctors, nurses, and church members.
During the bone marrow transplant, hundreds of cards, banners, and creative greetings were piled up on Brandon's bed so he could visualize how many people were sending their love and prayers.
Opportunities for creative expression were also important to the Berglunds. Music, writing, and photography now fill numerous journals, scrapbooks and recordings. The family also worked with Katy Tartakoff, founder of The Children's Legacy. In 1994, Rita collaborated with Tartakoff and Laurie Shields on "An ABC About Kids With Cancer," a book to help families talk, share, and creatively express their struggles with life-threatening disease.
Brandon's mother now has found the time to go back to school. She is pursuing her dream of providing family therapy when children suffer a critical illness. She understands all too well the chaotic life such families are forced to lead.
Rita once wrote a poem she called "Redefining Normal" which describes the difficult process of letting go of past expectations and accepting new realities. She observes: "There are old dreams to grieve and new visions to be experienced as the landscape of our lives leads us to celebrate and look with wonder at each new day. The years of Brandon's illness have been like a continuously changing landscape, including some tunnels, mountains, valleys, plateaus, vistas, fog, bad weather, good weather, and rainbows. And the journey continues."
