Charlotte's Journey

The past 36 hours have been unexpected. Yesterday afternoon, Brian and I had a remote conference with Dr. Sholler who runs the DFMO trial out of Levine Children’s in Charlotte NC. This trial is aimed at a 2 year oral medication to help during maintenance called DFMO and has been studied for quite some time. The current trial that is open has added an additional low dose chemo in oral pill form called Etoposide. Charlotte’s had etoposide several times already during treatment and this dose would be a much lower dose for 3 week cycles for about 6 months. Then continued oral DFMO foe remaining 2 years. Some extra evaluations would be required (2 more bone marrow biopsies when we hoped those were all done) and some extra MIBGs. Here are the issues: 1.Charlotte would be the first ever on this trial out of the Neuroblastoma Vaccine study. They do not know how kids who have gone through vaccine will respond to the etoposide. Will the supposedly slight immunosuppression from chemo combat all t

Today, Charlotte swallowed her FINAL dose of medication that accompanies the year long investigational clinical trial she has completed not once but twice now. (She has been swallowing a very large volume of a very viscous solution for 14 days in a row every 2 weeks on and off for a full year. Many cannot hardly stomach this but she has always taken it easily and has even shared videos of herself swallowing it for other children on this study who struggle in an effort to help and cheer them on).  Charlotte’s first grade school picture came in recently. Her Kindergarten school picture shows a timid and uncertain little girl straight out of chemotherapy and radiation, who was proud that she made it to school after her world was flipped upside down once again. Her first grade picture shows a confident and self assured little girl who is still proud to be here, thriving and blossoming. Brian wisely told me once how the things you don’t want to happen in life happen very quickly, whereas th