DFMO Clinical Trial

Caroline and Mark traveled to Levine Children's Hospital in Charlotte, NC this week to enroll in the only "expanded access" DFMO clinical trial currently available.  "Expanded access," also called “compassionate use,” allows patients with serious/life-threatening conditions to gain access to investigational medicine for treatment when no alternative therapy options are available, and they aren't eligible for the drug though any other trials.  Although it's been a long, administrative-heavy process to get access to this drug, we believe DFMO will give Caroline the best chance for remaining NED (no evidence of disease).  

Caroline enrolled in the DFMO clinical trial at Vanderbilt in April 2019, immediately after completing the treatment protocol for her original diagnosis.  She took 6 pills per day for 2 years...remaining cancer-free while taking the drug, and then relapsing within a year of stopping the medication.  This time, Caroline will be getting "high-dose DFMO," which requires her to take 22 pills per day for 2 years (that's 16,060 pills!!!).  DFMO is only available within clinical research trials, and only for a 2 year period.  Unless the FDA approves this drug as a part of standard treatment and/or maintenance post-treatment, Caroline will have to stop taking DFMO in June 2025.

Vanderbilt and Levine have both been amazing through this process, and thankfully are willing to work together to minimize our travel.  She will continue to go to Vanderbilt for monthly labs/tests and progress scans every 3 months, but will be required to travel to Levine to visit their clinic periodically to get the clinical trial medication.

Many thanks to Dr. Giselle Sholler, her team, and the Beat Childhood Cancer Foundation for remaining steadfast in their search for a cure to give these kids the best chance at life.

We will continue to post on this blog as there are updates.  Thank you for your never-ending support, love and prayers for our family.  Cancer sucks.

The Lantz Family

#carolinestrong

#ftgf

Caroline and Dr. Sholler

3 months of DFMO

(part of) 1st Dose - Let's Goooooooo!

A Message from Caroline: Scan Results!

 

A message from Caroline about her PET and CT Scan results...stay tuned for an update next week on bone marrow biopsy results and her visit to Levine Children's Hospital to start her clinical trial...

SEVENTEEN Cycles: Complete!

When Caroline relapsed in April 2022 and we were working with her team to figure out the best treatment plan...eventually landing on 17 cycles Irinotican, Temodar and Dinutuximab therapies would statistically give her the best chance of beating this disease (again). 17...SEVENTEEN...17 cycles felt so far away...sometimes it didn't feel like we'd ever get to this cycle - literally and figuratively. But, here we are...she did it.  We did it!  

HOME from the last cycle. CYCLE SEVENTEEN. In 14+ months, Caroline has been inpatient for 106 nights at Vanderbilt, while getting:

- 85 doses of Irinotecan Chemotherapy

- 85 doses of Temodar Chemotherapy

- 68 doses of Dinutuximab Immunotherapy

- 119 Leukine Shots to boost her immune system

- thousands of doses of oral medication

- hundreds of "pokes" for labs, PIVs, etc.

- countless scans, tests, biopsies, x-rays, labs, etc.

She missed 74 days of school, but still averaged STRAIGHT As for the entire year! The 3rd Grade superlative selected for her was "Future President," which seems very fitting!

Progress scans are scheduled for next week and will update blog after that.

We're exhausted and drained, but beyond grateful.  Thank you for the continued prayers and support.

The Lantz Family

#carolinestrong

#ftgf

Final "walk out"n from 6A to the "No More Chemo" Song...make sure you check out Caroline's dance moves at the end!  We love our Vandy "framily!"

Cycle 17: "Sad, Excited, Scared..."

Caroline was admitted for Cycle 17 of treatment for relapsed Neuroblastoma. Her ANC was low today, but her labs looked ok otherwise, so with her doctor's approval, we’re pressing on with her FINAL cycle. Caroline has already been sick 3 times in the first 3 hours of admission today...likely a combination of nerves and the general scent of the hospital making her nauseous.  Her feeding tube had to be replaced (which she inserted herself!), then x-ray came to confirm proper placement (she placed it perfectly).  

Last night, we asked Caroline how she was feeling about the end of treatment. Her exact words were: “sad, excited and scared…sad because I won’t get to see all of my inpatient nurses, excited for treatment to be over, and scared that my cancer will come back.” We told her that we feel the exact same way.

We’re praying for an uneventful week going forward, and hope to be discharged on Saturday.  We'll update the blog when we're home and have "next steps." 

Thank you for the continued love and support,
The Lantz Family

PS: #carolinestrong t-shirts are still available for purchase by clicking here.  Thanks, Zack!

Rough start to Cycle 17...

HUGE thank you to Michelle for decorating Caroline's room for every single cycle since 2017!  It was definitely a "full circle moment" to have you hang the decorations for her final chemo cycle...love you!