Thursday, January 4, 2024

Scan Results / DFMO Approval

We had a rather stressful holiday season that consisted of multiple visits to Vanderbilt and a trip to Levine Children's Hospital in Charlotte.

  • December 19th: Labs, CT Scan, PET Scan, Clinic visit and and a blood transfusion @ Vanderbilt
  • December 20th: we received news that the PET scan was clear, but the CT scan showed a spot of concern on the bone in Caroline’s pelvic area.  After discussing with Caroline's medical team and a surgeon, we decided to move forward with a biopsy to rule out another relapse.  As an extra precaution, they also decided to do a bi-lateral bone marrow biopsy while Caroline was already sedated.
  • December 22nd: Traveled to Levine Children's in Charlotte, NC for a Clinic visit and DFMO refill
  • December 28th: Caroline was sedated for a bi-lateral bone marrow biopsy in her lower back and a CT-guided biopsy of the concerning spot on her right pelvic bone
  • January 3rd:  After delayed test results due to the holiday, we received news that BOTH BIOPSIES ARE CLEAR of any cancer

After almost 3 weeks incomprehensible anxiety and fear, we are able to exhale a little and try and reset as we move into the new year.  We're so thankful for Dr. Smith and the entire medical team for acting so quickly to get us clarity!

On another note, we are thrilled to celebrate that after a decade, the FDA approved DFMO (now called "iwilfin") for maintenance treatment of Neuroblastoma.  Soon, the drug will be available for all doctors to prescribe anywhere in the United States.  Special thanks to Dr. Sholler, Pat Lacey and the entire BEATCC team for working with US WorldMeds and the FDA to get this done!  The approval of DFMO is the first pediatric cancer drug ever to approved without a double blind placebo study.  Click here to read all about the precedent-setting approval...simply amazing!

Wishing you all peace and health in 2024,
The Lantz Family

Walking herself back to surgery

In recovery, waking up from sedation

Leaving Levine Children's with DFMO!

DFMO - now called "iwilfin"