Mattie Miracle Therapy Grants Extending Support Beyond Hospital Walls
September is Childhood Cancer Awareness Month. But for many families, awareness is not confined to a single month; it is a constant reality. Every day. Every hour. Every minute.
Since my last article, I have launched my private child life practice, Illuminate Child Life , where I support children and families both at home and virtually. Child life outside of the hospital setting looks very different. In the hospital, the medical team only sees a small snapshot of what families endure while navigating a cancer diagnosis. But the anxiety and trauma of hospitalization, procedures, and treatments do not stay behind when a child leaves the clinic. Medical trauma follows families home and weaves into daily life. Outside of the hospital, the role of child life has to bridge the gap between home and hospital and how to cope with the impact of cancer. Gtube feeds still happen. Central line dressings still need to be changed. Medications still need to be given, again and again. Although the child is home, surrounded by familiar comforts, they remain a patient, and parents become more than caregivers; they become medical providers for their child.
Since starting my practice, I have had the privilege of working with Amelia, an almost four-yearold girl who has been battling a brain tumor since last January. Amelia is smart, funny, perceptive, and playful. Our sessions often center around her illness. She processes her hospitalizations and medical interventions through play, using both real and pretend medical tools. Her “patients” are usually her stuffed animals and dolls, though sometimes she chooses to be the patient herself, allowing us to process her experiences through play.
Amelia is incredibly articulate and honest. She makes it clear that she is not a fan of the hospital. Yet, over time, I have seen her make remarkable progress in her coping, both at home and during hospital visits. That does not mean her medical trauma has disappeared. It is impossible to imagine the weight of the countless interventions a child with cancer is expected to endure.
What has struck me most in working within the home is how much I did not see while I worked in the hospital. Amelia’s mother keeps detailed calendars and lists to track appointments and medications. She battles with insurance companies and pharmacies to ensure Amelia receives what she needs. She had to step away from her career to care for Amelia, who cannot attend school because of her compromised immune system. Every day, Amelia’s mother is attuned to both her medical and emotional needs. This is why she chose to bring a child life specialist into their home.
As one might imagine, the financial burden of caring for a child with cancer is overwhelming, and as I have shared in past newsletters, child life is not a billable service; insurance does not cover it. This means families must pay out of pocket for essential psychosocial and coping support. With Amelia, it quickly became clear that she needed ongoing, comprehensive child life services, not just a few sessions. Remembering that the Mattie Miracle Cancer Foundation provides grants for therapy, I reached out to ask if they would consider funding child life as well. The committee responded quickly. Through the Mattie Miracle Cancer Foundation, Amelia’s family received a grant that now makes it possible for her to continue receiving child life services without the added financial strain.
This grant means Amelia has the space and support to process her medical journey through play, to strengthen her coping skills, and to find moments of joy in the midst of such a difficult reality. It also means her parents can focus on caring for her without the constant worry of how to afford the psychosocial support she so clearly needs.
Amelia’s story is just one example of how child life in the community can fill a critical gap for families. The hospital is only one piece of the cancer journey. Life at home is where the weight of caregiving, medical trauma, and ongoing uncertainty truly unfolds. By extending child life beyond hospital walls, we can meet families where they are, providing continuity, compassion, and coping strategies that last well beyond a single hospital visit.
As we mark Childhood Cancer Awareness Month, I am reminded daily that awareness is not a campaign or a ribbon. It is the lived reality of children like Amelia and the families who walk this path alongside them.
