Guest post by Shelly Boyce and McCullough Foundation Scholar Kirstin Cosgrove, CCRA
When Judah was diagnosed with cancer at 6 years old, his family quickly discovered that “choice” in pediatric oncology is largely an illusion. His diagnosis was decided after a single round of lab work, chemotherapy began before a confirmatory biopsy, and questioning the 2.5-year treatment plan was treated as defiance despite his stable condition. A second opinion revealed that nearly every pediatric cancer center in the U.S. follows the same rigid protocols, leaving parents with no real alternatives—only compliance with a one-size-fits-all protocol. Any questioning of these protocols may result in every parent’s nightmare: Having their child placed in a foster home until the end of treatment. The message: in pediatric cancer treatment, do what you’re told or lose your child.
Estimates suggest the majority of adult oncology patients report using at least one form of complementary or alternative therapy following their diagnosis. While these supplemental modalities may not be praised by traditional oncologists, the patients are not risking their freedom by choosing other care options. Questioning a child’s treatment plan however, even when the evidence shows there are safe and efficacious alternatives, can be construed as neglect with disastrous consequences.
Judah’s family sought evidence-based, precision, treatments to use in addition to the prescribed chemotherapy, supported by research and overseen by credentialed, independent providers. These included targeted nutrition and gut health support, hyperbaric oxygen therapy to offset chemo-induced anemia, strategic supplements to support the liver and safe neutrophil counts, careful movement to optimize the lymphatic system, and nonpharmacological therapies like acupressure and laser treatments that manage chemo side effects. However, rather than reviewing the evidence behind these possibilities, they were told by the treating hospital that these approaches were useless at best. Some well-researched options, like IV vitamin C, mistletoe therapy, and CBD oil were even forbidden. When they transferred to another treating facility, the family faced the same resistance.
When Judah’s health exceeded expectations, the doctors were frustrated instead of curious. In one routine visit for monitoring remission, the family brought two published papers and a question to the doctor: “Judah is healing. Can we personalize his remaining treatment as presented in these papers?” The provider raised their voice, accused the family of not complying with treatment, and threatened a Child Protective Service (CPS) referral. They said that unless his condition began to look like a typical cancer patient, the family would be investigated for neglect.
But Judah wasn’t the typical pediatric cancer patient. He’d received every prescribed dose of IV chemotherapy but without the common side effects. His labs showed the oral chemotherapy present but without the usual symptoms. The family even hired an in-home nurse nightly to validate medication compliance with videos and notarized medication delivery logs. They did a genetic panel revealing that he detoxes faster than average. With the help of an attorney, evidence was formally delivered to the providers and their legal team. But that was not enough. After months of verbal and written threats, the parents were referred to CPS for suspected medication non-compliance and were dismissed from the practice.
With just six clinical encounters remaining in the protocol, the family found themselves without a provider to handle Judah’s time sensitive care and facing an unwarranted CPS investigation. Then came the home visits, the questioning of their four children behind closed doors, the rush of finding a new provider, and the deep, frantic worry about what ifs.. We’ve all heard the heart wrenching cases of CPS taking the kids first and asking questions later. Fortunately, the evidence spoke for itself, and the CPS social workers saw a loving family dedicated to health and clean living. The case was closed after weeks of investigation, but the lasting impact and trauma remain.
As Judah’s story unfolded, his family connected with a growing community of families who found tools to improve their children’s quality of life and reduce relapse risk, but they too were not allowed to use them. Their best approach is complete silence and lots of prayer that their child won’t look too healthy until treatment ends. Judah’s experience serves as a cautionary tale of what can happen when impersonal, protocol-driven care leads to unchecked authority and blockages to the best available treatment options.
Laws allowing doctors to override parental consent in life-threatening cases left the family legally trapped in a 2.5-year chemotherapy protocol while being scorned or blocked from supportive therapies that improved their son’s outcomes. Now nearing the end of treatment, the family is speaking out to advocate for policy reform. It’s time to close the growing gap between cutting-edge science and what children are legally allowed to receive. A life-changing and traumatic pediatric cancer diagnosis shouldn’t force the impossible choice between keeping custody or the best treatment options.
Are you already making change in this area of medical freedom? Do you know families who want to shape the future of cancer care for kids or someone in a position who can help amplify the need? It’s time to get so loud that we can’t be silenced with threats of CPS. Only a very small portion of the federal cancer research budget goes to pediatric cancer drug studies and nearly zero of that goes to studying how kids like Judah thrive through treatment. Children deserve better.
To support this initiative, you may contact the authors at https://theboycehomestead.org/contact-us/
Interview from Children’s Health Defense TV: https://live.childrenshealthdefense.org/chd-tv/shows/doctors-and-scientists-with-brian-hooker-phd/the-reality-of-informed-consent-show-page/
