Mattie was born on April 4, 2002. Mattie was a precocious child who demonstrated many strengths, such as a sense of humor, observational skills, ability to understand how things worked (at the tender age of two he was disassembling and reassembling his hot wheel cars with a screwdriver), and empathy beyond his years. He had a vivacious and voracious need to have fun, and he convinced others to participate in his antics. In July of 2008, when Mattie was 6 years old and attending a tennis camp, he complained of pain in his right arm. When the symptoms got worse, his pediatrician ordered an x-ray, which revealed a mass suggestive of osteosarcoma in Mattie’s right humerus. CT, MRI, PET scans, and a biopsy confirmed four primary tumor sites: (1) right humerus, (2) left humerus, (3) right femur, and (4) left radius. We were informed that our only child had multifocal synchronous osteosarcoma.

Sixteen days after diagnosis, Mattie began 14 months of treatment including high-dosage chemotherapies with doxorubicin, cisplatin, methotrexate, ifosfamide, and etoposide. He underwent three limb-salvaging surgeries and a bone graft. Eleven months after his diagnosis, Mattie had a sternotomy, to remove the nine tumors found in his lungs.

What we, as Mattie’s parents and our family members, observed was his struggle to learn how to cope with the profound functional impact of his surgeries and the change in his daily life due to his treatments. He could no longer walk, run, dress, or toilet himself. Within months of his second surgery, Mattie began working with a child psychiatrist who diagnosed him with clinical depression, anxiety, and medical post-traumatic stress disorder. He was started on Celexa and Klonopin to reduce his significant sadness and anxiety.

In August of 2009, only 6 weeks off of chemotherapy, scan results revealed that Mattie’s cancer had spread to his lungs and liver. Conversations with Mattie’s medical team turned from curative intent to end-of-life care. We had to face our worst fears: the reality that our child was dying and the stressful and frightening medical decisions associated with this reality. Mattie died on September 8, 2009.

The devastation of losing a child to cancer is both unimaginable and indescribable for parents. Such a death symbolizes a reversal of the natural order of life and it erases the dreams and hopes that parents have for their child and for themselves (Alam et al. 2012). Parents may continue to grieve long after the death of their child (Kreichbergs et al. 2004; Wing et al. 2001). Such chronic grief has been associated with many psychological (e.g., depression and anxiety) and somatic symptoms (e.g., loss of appetite, sleep disturbances, and fatigue), including increased mortality risk (Alam et al. 2012; Li et al. 2003; Wing et al. 2001; Znoj and Keller 2002). In November of 2009, two months after Mattie’s death, we created the Mattie Miracle Cancer Foundation, a 501(c)(3) tax-exempt public charity. Mattie Miracle is headquartered in Washington, DC, and is dedicated to addressing the psychosocial needs of children and families living with childhood cancer as well as educating health-care providers on the impact of such a diagnosis on children and their families. The foundation enhances awareness, advocacy, and access to psychosocial support on both the local and national levels.

The provision of psychosocial care has been shown to yield better management of common disease-related symptoms and adverse effects of treatment such as pain and fatigue (Jaaniste et al. 2007; Jacobsen et al. 2012; Kazak 2005). Within the first few days and weeks of a diagnosis, parents immediately seek out information and supportive resources to reduce the chaos they are experiencing (Björk et al. 2005). However, the strain of such a diagnosis can send parents into shock (McGrath et al. 2007) making it difficult to recall and process medical information under stress (Jedlicka-Köhler et al. 1996). Parents are learning medical terminology, understanding the nature of their child’s disease and treatment plan, maintaining their child’s day-to-day care, figuring out how a hospital works and the hierarchy of the personnel within it, and of course doing all of these while potentially trying to maintain a job and the rest of their family’s obligations.

Establishing a therapeutic alliance between psychosocial professionals and children/parents is a vital aspect of pooling resources together toward a common goal (Masera et al. 1998). Though parents need the support, guidance, and resources that their psychosocial care team provides, it is important for clinicians to approach families right from the beginning with the attitude that they are an integral part of the treatment team. Parents have an expert understanding of their own children and clinicians need to respect these insights. This is critically important for parents who feel vulnerable and powerless over their child’s disease (Holm et al. 2003) and the uncertainty surrounding their child’s treatment outcome.