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
#carolinestrong
#ftgf

Walking herself back to surgery

In recovery, waking up from sedation

Leaving Levine Children's with DFMO!

DFMO - now called "iwilfin"

Friday, November 24, 2023

6 Year Cancer-versary

On this exact day - Black Friday, November 24, 2017, Caroline was diagnosed with Stage IV, High-Risk Neuroblastoma.  6 years later, November 24, 2023, another Black Friday, we took a drive down to the hospital for the annual "Snowman picture."  

Team Lantz - still standing 6 years later...



Thank you for your continued love, support and prayers for our family!
#carolinestrong
#ftgf

Sunday, October 1, 2023

Updates: Scans, Charlotte/Clinical Trial, Hearing Loss and "Regular" Life

It's been a busy 3 months since we last updated the blog; Caroline has lived a lot of life!

Starting with the best news, her most recent scans last week continued to show NO evidence of disease!  

Caroline has been on the high-dose DFMO clinical trial drug since the end of June, and has overall been able to tolerate it well.  She's required to get monthly lab work at Vanderbilt for monitoring; each time showing her hemoglobin number trending downward...a common side effect for DFMO.  She got sick (common cold) a few weeks ago, and required a hospital visit and a blood transfusion because her hemoglobin was below the threshold.  She also recently started struggling with her hearing, another common side effect of high-dose DFMO.  In the past 3 months, Caroline actually lost about 50% of her hearing from baseline.  After discussing the impact of side effects with her clinical trial oncology team at Levine Children's Hospital, they've reduced her daily dose by 2 pills...so she's now taking "just" 20 pills per day.  She is being fitted for hearing aids this week, and we will re-check her hearing in a month to re-assess.  We are hoping the hearing loss is temporary while on the trial drug, but there is no guarantee either way. Unless otherwise needed, her next scheduled scans at Vanderbilt and visit to Levine Children's will be towards the end of December.  In the meantime, she will continued to be monitored monthly with lab work.

Outside of the medical updates, Caroline has really being thriving!  She turned 10 in July, celebrating the milestone with all of her cousins in Maryland.  A few weeks later, she received an amazing carnival celebration from the Dreams & Wishes Foundation.  Caroline had the best time, and the party truly left us speechless.  Soccer started in August, and she's really found her niche as the goalie (aka "Keeper")...most games resulting in a shut out!  A local news reporter, Forrest Sanders, did a story featuring Caroline's Dreams & Wishes Party, as well as her playing soccer: click here to watch the video!  She's doing well in school, experimenting with with a slime business and hanging out with friends.  

As for the rest of our family, we're finding our footing and falling back into as much of a "normal" life as possible.  Thank you for the continued prayers and support...we're so grateful.

The Lantz Family
#carolinestrong
#ftgf


3-months post-treatment PET Scan = NED!!!

10th Birthday Party in MD with cousins

Birthday Girls! 
(birthdays one week apart)

Dreams & Wishes Party

Caroline leading Buddy the miniature horse during the Franklin Polo Match benefitting Angel Heart Farm

Luke Bryan Concert

"Slime Time with Caroline" at the Green Hills Park Children's Market

Nona & Papa marking "carolinestrong" on the Route 66 Cadillac Ranch Art Install

Mark's 50th!

Legal driver - pray for us!

We love Vanderbilt!

Friday, June 30, 2023

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!

Wednesday, June 21, 2023

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...

Saturday, June 17, 2023

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!"

Monday, June 12, 2023

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!  

Monday, May 29, 2023

Home Sweet Home from Cycle 16

Caroline was discharged from Cycle 16 (of 17) of her inpatient treatment at Vanderbilt on Saturday.  As with the pervious cycles, she will get daily Leukine shots at home for the next week to boost her immune system, and then hopefully recover well enough for her final cycle of inpatient in a little over 2 weeks.

We are so grateful for the amazing care team at Vanderbilt - they did a great job this week addressing all of Caroline’s struggles with chemo side effects; her nausea was particularly rough this stay.

Also, much appreciation, honor and respect for the American men and women who have served and given all for this great country; we know that Freedom isn't free...thank you for your service.

The Lantz Family
#carolinestrong 
#ftgf

Tuesday, May 23, 2023

Cycle 16

Caroline was admitted yesterday for Cycle 16 (of 17) for treatment of her relapsed Neuroblastoma.  Like all the previous cycles, she will get 2 types of chemotherapies and an antibody treatment along with numerous other medications for side effects and comfort.

She tested positive for rhino/enterovirus (aka the common cold), so we'll be on isolation while she's here.  We're hoping she doesn’t have any additional issues with oxygen, etc. with all the sinus drainage.

If all goes well, we are hoping Caroline can come home Saturday.

Thank you for the continued prayers and support!
The Lantz Family
#carolinestrong

Getting swabbed before being admitted...

Thursday, May 11, 2023

Treatment Schedule Update / Next Steps

Caroline completed Cycle 15 (of 17) for treatment of her relapsed Neuroblastoma. She came home Saturday and has been feeling well enough to participate in school and family activities this week. Assuming she meets her bloodwork requirements, her next scheduled admission will be May 22nd. We are hopeful she can stay on track and finish out these last 2 cycles on time (by June 17th).

In other news, we had a call this week with our Vanderbilt Oncology team and the Oncology team from Levine Children’s Hospital in Charlotte, NC, to discuss post-treatment “next steps.” Assuming all goes well with Cycles 16 and 17, her bone marrow is clear, and her scans remain clear after treatment, we will be enrolling Caroline in a high-dose DFMO clinical trial at Levine Children’s Hospital. This drug (DFMO) is one of the only available maintenance treatments for Neuroblastoma in the world. We are grateful that Caroline will be able to take something to hopefully/potentially prevent another relapse. We will keep you posted as we get closer, but we are very appreciative of Dr. Smith’s and Dr. Sholler’s teams working together - not only help minimize travel, but most importantly, give Caroline access to the best possible chance of surviving this awful disease. More to come…

Thank you for all the prayers and continued support (especially the Ubereats cards for the hospital)!
The Lantz Family
#carolinestrong
#ftgf

Caroline in Hyde Park, FL a few weeks ago...

Wednesday, May 3, 2023

Cycle 15

Caroline is currently inpatient for Cycle 15 (of 17) of treatment for her relapsed Neuroblastoma. Side effects hit her quickly and harshly on Monday, but they're currently under control. As always, we're praying for a continued uneventful, effective cycle.

Thank you for the continued support and prayers!

Much love,
The Lantz Family
#carolinestrong
#ftgf

Caroline's anti-nausea meds made her sleep through Mark & Andrew's visit, so we documented their visit for when she woke up...

Thursday, April 20, 2023

Progress Scans Results

Caroline had progress scans on Monday (4/17); the scan results:  

CT scan: No new findings to suggest recurrent or metastatic disease.

PET Scan: No definitive evidence of malignancy.

We are obviously thrilled that Caroline is continuing to beat this disease (again), and it's giving us some renewed energy and hope as we continue onward with this long and exhausting treatment plan.

Assuming nothing unexpected happens and her counts are ok, Caroline's next admission is scheduled for May 1st...Cycle 15 (of 17) of chemotherapy and antibody. 

As always, thank you so much to our Vanderbilt medical team, family, friends, and the entire community of prayer warriors - we're beyond grateful for the continued love and support!

The Lantz Family
#carolinestrong 
#ftgf


Saturday, April 8, 2023

Relapse-iversary / Cycle 14 Complete

After a mostly "uneventful" Cycle 14, Caroline was discharged this morning and is home resting.

Today also marks the one year anniversary of Caroline's relapse, so we thought we'd share a review of the last 365 days in numbers...

196 - chemo/antibody infusions
91 - nights inpatient at Vanderbilt
18 - X-Rays
8 - CT Scans
6 - PET Scans

...along with countless doses of medication and needle pokes to access her port, place peripheral IVs, and  shots to boost her immune system...

Caroline is scheduled for her next round of scans the week of April 17th, and admission for Cycle 15 on 5/1.  Thank you for your continued prayers and support; the love from this community has helped carry us this past year.

Much love,
The Lantz Family
#carolinestrong

Peace out Cycle 14!

Tuesday, April 4, 2023

Cycle 14 / Life Lately

Caroline was admitted yesterday for Cycle 14 (of 17) to treat her relapsed Neuroblastoma. She's struggling with the "usual" side effects...mostly nausea and vomiting, but we're praying for an otherwise uneventful stay.

Thank you for your continued support,
The Lantz Family


In other news, Caroline felt ok between cycles...lots of spring break fun!  
Taking her BFF to the groomer!

Climbing high at SOAR

Day at the Nashville Zoo



Daddy-Daughter vacation to visit family in FL

Sunday, March 19, 2023

Cycle 13 Complete / Clip in 4 the Cure

Caroline was discharged from Vanderbilt on Saturday and is now home resting.  Other than the "normal" nausea and belly pain, the week was relatively uneventful.  She will get daily Leukine shots for the next week to help bring up her neutrophils (immune system).  We're hoping she recovers well at home, and is able to enjoy the next two weeks of "track out break" from school.

This coming Saturday (3/25), Caroline will be speaking as an ambassador for the hospital at the "Clip !n 4 the Cure" event, which raises funds for cancer research to find cures.  If you’d like to support the event by participating or donating to the cause, click here for the link.  

Thank you for the continued prayers - they mean so much.

All the best,
The Lantz Family
#carolinestrong
#ftgf

Peace out, Cycle 13!

Here is a promo video Caroline made for the VUMC social media crew to promote Clip In 4 the Cure!

Monday, March 13, 2023

Cycle 13 on 3/13

Caroline made her blood count requirements today for inpatient admission of Cycle 13 (of 17) for chemotherapy/immunotherapy treatment for her relapsed Neuroblastoma.  She is in good spirits...especially with the fun room decorations ☘️ for St. Patrick’s Day, thanks to the help of Michelle P.!

Please pray for a relatively uneventful week of side effects; we hope to be discharged on Saturday.

The Lantz Family
#carolinestrong
#ftgf


Sunday, February 26, 2023

Unplanned Hospital Stay

Unfortunately, after just a couple days home from Cycle 12, Caroline went to the ER with intense stomach pain and was admitted back into Vanderbilt.  A CT scan showed inflamed intestines and bowels, so she was admitted inpatient while we waited on results from all the lab work.  It was determined to be a nasty bacterial infection called C. Diff, ironically commonly acquired in a hospital setting.  C. Diff is very dangerous for someone who is immunocompromised, so they don’t mess around with diagnosis, admission and treatment.  The symptoms hit her quickly - extreme belly pain, nausea, vomiting, and diarrhea.  Once we knew the cause, a targeted antibiotic was started asap, as well as IV fluids for the entire stay.  By Friday, she seemed to have turned a corner, and was able to go home on Saturday, after being there for 5 days.

Caroline will continue on the antibiotic for this rest of the week, and is back to eating and drinking normally again.  We're hoping THIS week we can really catch a much needed break, and get her back to school and some routine.  It's been a very tough week for all four of us.

Thank you, as always, for the continued support and prayers.

The Lantz Family
#carolinestrong
#ftgf

Saturday, February 18, 2023

Cycle 12 and Life Update

Today, Caroline completed Cycle 12 (of 17) of her chemo/anti-body treatment for relapsed Neuroblastoma.  It was a relatively "uneventful" cycle with "just" the expected side effects: fever, nausea, diarrhea, etc.  She is now home resting and recovering, and we're hopeful she feels well enough to go back to school this upcoming week.

Caroline has been busy this past month enjoying fun activities and time with friends and family.  She started guitar lessons, got a visit from Aunt Joanna and Mr. Ryan, watched her first Junior Hockey game with the Accardo family, learned to ice skate, attended a Predators home game, brought Hank to school, and visited Andrew on his first day at work!  We are so happy that she can take part in some "regular kid" stuff to help distract her from this very long and taxing treatment process.  

As always, we are very grateful for the staff at Vanderbilt for taking such great care of us!!!

Thank you for the continued support and prayers,
The Lantz Family
#carolinestrong
#ftgf