Cycle 2: Complete / #carolinestrong T-Shirts Available

Caroline completed Cycle 2 of immunotherapy today. Although she had some chest pain, itching and a mild rash during the infusion, the side effects were milder overall compared to the first cycle.

She will get the next few weeks "off" before her appointment on September 10th, which will consist of lab work and progress scans to see how/if this treatment is working. We're hopeful she'll be back to school next week and doing as many "normal" and "fun" things as her body allows.

For those interested, #carolinestrong shirts and hoodies are now available online (click here for the link); all proceeds will do directly towards Caroline's medical expenses.

We're so grateful for the ongoing love support and prayers for our family - it means so much!

Love,
The Lantz Family
#carolinestrong
#ftgf

Scan Updates

September is Childhood Cancer Awareness month, and there's no better way to kick it off than by sharing some good news about Caroline beating cancer...again!

After a very long day of testing that included blood work, CT scan, PET scan, Bone Marrow Biopsy and a follow-up appointment with the orthopedic team for her broken finger, we finally have all the results:

• Broken Finger: Healing well

• Blood Work: Mostly in normal range

• CT Scan: No Evidence of Disease

• PET Scan: No Evidence of Disease 

• Bone Marrow: No Evidence of Disease 

So, as of now, there are no visible signs of Neuroblastoma cells present in Caroline’s body!  We will celebrate for a few days, but get back to continuing the fight on Tuesday, for Cycle 7 of her inpatient treatment.

Caroline's Oncology team recommends up to 11 additional cycles of treatment (17 cycle total) to reduce the chance of reoccurrence and/or missed microscopic disease identified on the scans.  It's not fun, it’s hard to manage, and it's beyond hard to watch.  The treatment wreaks havoc on her body, and the risk of secondary cancers increases with each chemotherapy treatment, but the odds of relapse are generally much higher than these other concerns, so we are all in agreement to continue to keep it rolling.

We were honored to partner with the following organizations/people in support of Childhood Cancer Awareness Month.  Please help us continue to raise awareness and funds for pediatric cancer research this month by supporting any/all of the following: 

In Love There's Light

Caroline created a signature scent

Cooper Trooper Foundation

Focusing on much-needed sibling support for pediatric cancer families...and if you're local, please support their annual Pumpkin Patch next month!

Monroe Carrell Jr. Children's Hospital at Vanderbilt

Saving children's lives daily

American Red Cross

There is still a national blood shortage - please donate if you're able!

If you're local, here are two other ways to support: 

Nashville Soccer Club

**local pick-up @ NSC Team Store only** 

Caroline created a scarf for NSC's 2022 "Kick Childhood...if you want to see the video of her creating the scarf and being interviewed, click here.

Anna Groos Photography

Mini-sessions with our favorite local photographer (we will donate the proceeds to the Beat Childhood Cancer Foundation)

We have so much appreciation for all those in the battle with us: her huge Vanderbilt team, the Beat Childhood Cancer team, our friends, family, neighbors, Caroline’s school, the Nashville Predators, the Nashville Sounds, the Nashville Soccer Club, co-workers of past and present, and so many others we don't even know.  Thank you for your steadfast support and generosity throughout the (almost) five year journey!

The Lantz Family

#carolinestrong
#ftgf

Cycle 3 Inpatient Stay - Complete

Today, Caroline completed the inpatient portion for Cycle 3 of her treatment plan for relapsed high-risk Neuroblastoma. She had a very rough week emotionally - lots of processing the diagnosis, its long treatment plan, and overall scariness of it all...otherwise, the side effects during her stay were the usual fevers, nausea, diarrhea, and pain.

Like the previous two cycles, Caroline will get Leukine shots each day (for a week) to boost her immune system while she recovers at home.  Her next clinic/labs appointment will be on Friday (6/17),  and her next scheduled inpatient admission for Cycle 4 will begin June 27th, assuming all goes as planned.

BIG shout out to our amazing Thales Academy family for the end of year celebration / fundraiser for Caroline yesterday. Nisha, Rachel, Mill Creek Brewing, and all that made it happen and attended - many thanks!

Please keep the prayers coming!

~The Lantz Family
#carolinestrong

#ftgf

Ways to help:

Donate Blood in Caroline's Honor

NEW: Meal Train

Cycle 3 Inpatient Stay = COMPLETE!

Update: Next Steps

After an overwhelming week full of appointments, consultative phone calls and exhaustive research amongst multiple hospitals, we feel confident that Caroline’s medical team has put together the best way to attack her relapse. Her Thursday PET scan detected additional spots of new disease, so we’ve all decided that the best course of action is to immediately start Caroline on two cycles of treatment for relapsed Neuroblastoma and then go from there.  

Here is what we know the coming weeks will look like:

April 19th: Echocardiogram, lab work and an appointment with Caroline’s oncology team

April 21st: Central line (port) placed in her chest for chemotherapy, antibody treatment, labs, etc., as well as a bone marrow biopsy to see if the disease has progressed to her marrow.

April (date TBD):  Admission for inpatient stay at Vanderbilt to start her first round of treatment, which will consist of 2 different chemotherapies that she did not receive during the standard treatment protocol, plus an antibody therapy that she's received before.

Cycle 1 will be about 1 week in the hospital, followed by 2 weeks at home to recover. While at home, Caroline will get daily shots to help boost her immune system and recover from the treatment; we hope she will be able to go to school some of the time between cycles.  Cycle 2 should start at the end of her 2 weeks at home.  After 2 full cycles (about 6 weeks from start), Vanderbilt will re-image Caroline to determine if there is any improvement at the disease sites.  If the treatment is working, additional chemotherapy cycles will continue...if not, her team will re-assess.

HUGE shoutout to our healthcare friends and family, near and far, who went WAY above and beyond for us in so many ways this past week - y’all know who you are and we truly could not be more grateful to you! 

We will continue to post all updates on this blog, and appreciate the love and support as we walk through this extremely difficult and scary time. Again.      

Thank you for the prayers,
The Lantz Family

PS: For those that have asked, once we get this treatment underway, we should have some news about #carolinestrong t-shirts. If you’d like to help in the meantime, here are a couple links:

American Red Cross Blood Donation

Caroline's Hospital Wishlist

Medical Expenses via GoFundMe

Family Meals via UberEats Gift Cards (sent to margaretlantz@gmail.com)

Caroline putting in her own PET scan contrast!

Life Update / Scan Results: 30 Months

Over the past few weeks, Caroline has recieved numerous post-treatement tests/scans/appointments, which concluded yesterday.  As always, we prayed hard for No Evidence of Disease (NED)...and we are beyond thrilled to be able to share that Caroline continues to be cancer-free since April 2019, 2.5 years after completing her standard treatment protocol for Stage IV, High-Risk Neuroblastoma and six months after completing her DFMO Clinical Trial!

Test Results: 
VMA/HVA urine test - NED
CT Scan - NED
X-Ray - No abnormalities
Labs/Blood Markers - All in good range, but she needs an iron supplement
MRI for Spinal Compression Fractures - No change
MIBG Scan - NED

We want to thank her amazing team of caretakers at Monroe Carell Jr. Children's Hospital at Vanderbilt, the Beat Childhood Cancer Foundation for her DFMO clinical trial, and the army of prayer warriors around the world who have supported us for (almost) 4 years.

Caroline is currently thriving in 2nd grade, playing soccer, hanging out with friends, and excels in her main sibiling duty of annoying her brother.  We are so grateful she has been able to enjoy being a “normal” kid in 2021.

September was Childhood Cancer Awareness Month, and Caroline was able to support and create awareness through a variety of events:

~Formulated a "carolinestrong" candle scent in collaboration with In Love There’s Light as a Fundraiser for Beat Childhood Cancer 

~Ambassador for the Children's Miracle Network during the "Ride of a Life Time" at Lifetime Fitness (shoutout to Ms. Hilary and her spin class!)
~Actor in a Love Your Melon and BeatCC awareness campaign video (click here to watch if you have Facebook)

Pediatric cancer is severly underfunded, recieving only 4% of all government funding for cancer-related research, so we are always honored to be asked and happy to participate in doing our part to shine a spotlight on this dreadful disease in hopes of advancing research.

All the best,
The Lantz Family

Results: 15-Month Check-Up

Last week, Caroline had her 15-month check-up at Monroe Carell Jr. Children’s Hospital at Vanderbilt. The immediate results of her numerous blood draw labs were just within average range, some slightly below, so we were anxiously awaiting the targeted Neuroblastoma urine tests (called HVA and VMA), which are typically the first indicator of a relapse.  These two test results always take a few extra days longer to come back, which is always so hard on us as nervous parents.  After a long weekend of waiting, we got the news this that both tests are in the normal range!  This is a great sign that there is still no evidence of Neuroblastoma in her body!  As you can imagine, we are very relieved, and so happy for her!

Real talk: we (Mark and Margaret) are really struggling with PTSD.  It's hard to return to “normal” when your life was obliterated by cancer; there is no going back to "normal."  So much of our life still revolves around the ripple effects of Caroline's diagnosis, treatment, current clinical trial and future hospital appointments.  We are doing our best to move forward every day, but we often find ourselves struggling mentally now more than when she was actually in treatment at the hospital.  During that time, our minds were on high alert and in "attack" mode - they were not fully processing what was happening.  Now we have the luxury of some time to think and process.  Cancer is never “over” or “behind us." We seem to actually suffer more now from “scanxiety” in the weeks leading up to her appointments, as well as some time after...even when the results are great news...than when she was in the thick of it.  So, next up in September, Caroline will get a CT Scan, MIBG scan, blood work, hearing tests, EKG, echocardiogram and more targeted urine tests.  

Thank you for all the continued prayers, love and support!  It really does mean everything to us - as they say,  it "takes a village.” 

Caroline is still on the clinical trial (called DFMO) that requires her to take 6 pills daily.  Funded by BeatNb.org, the DFMO team is diligently and quite literally trying to find a cure for cancer; their work is groundbreaking.  BeatNb sent out an email today where Caroline is featured in the lab with Dr. Sholler, one of the leading Neuroblastoma doctors in the country.  This picture was taken during a trip to see her last summer, and Caroline was actually looking at live Neuroblastoma cells!  We pulled the below directly from the recent email...the facts are mind-blowing: 

New paper published shows encouraging results for DFMO treatment DFMO is a treatment we hope stops kids with high risk neuroblastoma from relapsing, which we've helped fund clinical trials around for several years. A paper was recently published continuing to show encouraging results - you can read our full post here looking at the results. Here's the striking numbers:

Give this oral drug (with minimal side effects) to kids, and 5 years later?  95 kids out of every 100 is still alive. Don't give them this drug? 14 of those 95 kids will instead be dead. Give this oral drug (with minimal side effects) to kids, and 5 years later?  85 kids out of every 100 is still in remission. Don't give this drug? 20 of those 85 kids will have relapsed.

We're working to get DFMO approved so all patients have access to it. We still have work to do. At Beat Nb, we're working to make sure that EVERY kid with a cancer diagnosis gets a promise of "we know how to beat this." Thank you for helping make this a reality.

Click here To Donate to BeatNb


Wishing everyone all the best!
The Lantz Family

Happy Easter and Caroline is Officially 1-Year Cancer-FREE!!!

Although Caroline had her 12-month scans in early March, today (April 12th) marks the actual ONE YEAR Anniversary of No Evidence of Disease from her Stage IV, High-Risk Neuroblastoma diagnosis in 2017.  She is feeling great, and we've all been able to breathe a little bit more over the past 12 months.  Caroline is still taking DFMO, the clinical trial drug that reduces the chance of relapse in this type of cancer. That trial will end for her in April 2021.  We are very encouraged with both our results, and others that we follow on the study.  Thank you to beatnb.org for all the amazing work and support!

Thank you to everyone that has supported our family through this journey: our Franklin community, our amazing group of friends and neighbors, the Vandy staff and care team, local churches, our generous family, and all of the kind-hearted strangers (new friends!) from literally all over the world.  We could not have made it through this without all your prayers and assistance!

While we are beyond happy about Caroline's outcome and progress to date, we constantly think about the families that are still battling cancer every day, those that are just getting diagnosed today (especially during this dangerous time for immune systems and hospitals), and those that have lost a child to this awful disease.  Pediatric cancer is a scary, lonely and humbling experience for anyone that is touched by it, but we are doing our best to turn those thoughts and nightmares into action and progress towards advancing therapies and cures.  We have been actively trying to bring awareness and support to many of the organizations and professions that helped us, and many others, with cancer research and family support.

In March, Mark was invited to speak to 3 classes of Pharmacology students from one of the best Pharmacy schools in the country, Lipscomb University.  It was a great opportunity for us to share the Pediatric Oncology journey from a patient advocate's perspective, which is one part of the treatment protocol that cannot be taught in an academic textbook.  The students were very attentive and engaging; we appreciate that there is such a young and brilliant generation of future pharmacists entering the medical profession!

Additionally, over the last 12 months, Caroline and our family have participated in many fundraising and/or awareness efforts: for The Monroe Carell Jr. Children's Hospital at Vanderbilt, Make-A-Wish of Middle Tennessee,  The Nashville Predators Foundation, Children's Miracle Network, Cooper Trooper Foundation, Angel Heart Farms, Love Your Melon, Brett's Barn, and BeatNb.  We are so grateful for every one of these wonderful organizations, and the incredible work they do for sick children and their families! **We've linked all their sites for more information and giving opportunities.

Many thanks for the love and support...and Happy Easter to all!
The Lantz Family

Easter through the years...2014-2020

Mark speaking to Lipscomb Pharmocology Students

April 12, 2019: No Evidence of Disease!

TWO YEARS since diagnosis - where are we now?

It’s hard to believe we’ve hit the two year “cancer-versary” of Caroline’s diagnosis: November 24, 2017. We feel so many things, but mostly just grateful. Her original diagnosis was on Black Friday, and last year we were inpatient for Thanksgiving AND her one year mark...we are continuously reminded of how much we have to be thankful for, regardless of the holiday, or what the future holds.

The biggest blessing is that Caroline is alive and still has NO evidence of disease! She is on a clinical trial drug to (hopefully!) prevent relapse, and so far, so GREAT! She takes 6 pills a day, but relative to what she’s been through, it’s nothing. She is thriving in Kindergarten, was able to play soccer this Fall, and is enjoying being a Daisy Scout. She loves hanging out with her friends and having the freedom to do things that involve germs! She still loves singing, dancing, talking to everyone she meets, all things American Girl Dolls, and of course, her BFF dog, Hank.

Andrew has had his own version of challenges during this process, but he is resilient, strong, and protective of his little sister. He seems to have bounced back and is in full-on tween mode (fun times). He's loving all the new-found freedom Middle School has to offer, and is still football’s #1 fan!

As for Mark and Margaret...we’ve been trying to find or new “normal” over the past 6 months. Margaret went back to work full-time in September, and Mark has been steadfast in keeping our family together and supported; he's been our rock. PTSD is real, and it’s something that weaves in and out of our house regularly. We process and cope differently, but try to take each day, hour, minute as it comes, and practice patience.

As a family, we’ve slowly been able to show up for the community that carried us through, and it feels so good to be able to pay it forward and care for others. We’ve also been able to champion some causes that we so strongly believe in: BeatNB.org, Make-A-Wish, Children’s Miracle Network, and of course, the Monroe Carrel Jr. Children’s Hospital at Vanderbilt!

We will continue to use the blog to update as Caroline gets required scans throughout the rest of her clinical trail (approximately 18 more months). Thank you for pouring your love, support and prayers into our family…you have sustained us through the past 2 years.

Looking forward to the new year and new decade!

All the best to you and yours,
The Lantz Family
#carolinestrong
#ftgf

6-Month Scan Results

Caroline just completed 3 days of testing, which concluded today with a CT Scan and an MIBG Scan.  The results show that she still has NO EVIDENCE OF DISEASE at the 6-month mark.  She will continue to take her 6 daily pills of the DFMO clinical trail, and then return for a 3-month check-up towards the end of the year.

Thank you for your steadfast support and prayers through this long, long journey!

The Lantz Family
#carolinestrong

#ftgf

A special video message from Caroline!

Giving Back - Help Caroline's Team WIN!!!

Hello friends and family!

Caroline is back in school, playing YMCA soccer, starting Daisy Scouts, faithfully cheering on her brother (who is playing multiple sports!), and overall doing well.  Her next round of progress scans are scheduled for early October; we will update the blog with results.

With standard treatment behind us, our family has spent a lot of our free time giving back to the pediatric oncology community, and especially at Vanderbilt.  Most recently, Caroline was asked to participate in the Rascal Flatts Celebrity Golf Classic!  Please join us in donating to Team Caroline & Levi for Vanderbilt’s fundraising drive.  Let’s beat the other team and win this one!

Click here to DONATE!

Thank you for supporting our family, and pediatric cancer research/awareness!

The Lantz Family
#carolinestrong
#ftgf

BeatNb, Dr. Sholler & DFMO Lab Visit

Our family had the honor and privilege of spending a very rewarding day with the BeatNb.org team yesterday at their main research laboratory in Grand Rapids, Michigan.  To put it in context, the BeatNb organization is the national leader in the research and trials behind the DFMO drug that Caroline takes daily to hopefully prevent her cancer from relapsing.  DFMO attacks the root of the Neuroblastoma cells, so they don't ever have a chance the turn into harmful and deadly cancer cells.  DFMO has shown significant improvement in survival rates of patients that are on the trial and have no evidence of active disease as noted in this link: beatnb.org/dfmopaper.

Lead researcher for the DFMO trial, Dr. Giselle Sholler, and her team members, took us on a behind-the-scenes tour of the DFMO Lab, as well as The Helen DeVos Children's Hospital Oncology outpatient and inpatient clinics. We were joined by the entire BeatNb team (Pat, Kyle, Robyn, Charlie, AJ, Savannah and Yvette), as well as fellow advocates and partners (the creators of "Love Your Melon" were there!).  All convening from various parts of the country, we remained together all day and ended with great testimonials and conversations over dinner!  Seeing the research lab first-hand, and witnessing how the teams are diligently testing cancer treatments...trying to find a CURE for these amazing kids that are battling this horrible disease, was an educational and truly moving experience. 

A heartfelt thank you to our amazing friends Katie R., Ellen P., and Steve R., for each pointing us in Dr. Sholler's direction, back in November 2017, at the start of this journey.  Our goal from Caroline's  initial diagnosis week was to get to clear scans and successfully enroll in the DFMO clinical trial at the end of standard treatment.  She did it!  We met that goal, and we will do everything we can to advocate and support others who can benefit from this promising drug.

Feeling Blessed!

The Lantz Family
#carolinestrong
#ftgf
#wewillbeatnb

Caroline looking at active Neuroblastoma cells!

Thumbs up for trying to cure cancer!

Each vial contains the donated cells of individual Neuroblastoma patients.

Caroline and Dr. Sholler!

Bacterial Infection / Hospital Admission

After complaining of a headache on Friday night, and waking up in rough shape Saturday morning (vomiting, chills, leg and stomach pain, high fever) we visited the Williamson Medical Center ER, which is only 2 miles from our home. They quickly ran nose/throat swabs and urine/blood tests, but nothing showed up on those initial results, so we were sent home on an antibiotic as a precautionary measure.

Overnight in the hospital lab, a bacteria rapidly grew in the blood culture they took at Williamson, so they called us Sunday morning to report that occurrence, and asked us to go to the Vanderbilt ER ASAP.

After a visit with the doctors, and some more testing, Caroline was admitted to Vanderbilt Floor 6A today for an infection in her bloodstream. We aren't sure how or when she contracted it, but it can be very dangerous for someone with a (still) suppressed immune system.

She has already started a different IV antibiotic that she will receive twice a day while inpatient, and then hopefully move to oral antibiotics later this week. Caroline is already feeling and looking better than she did yesterday, so we are glad both Williamson and Vanderbilt were aggressive and persistent with their testing, follow-up and diagnosis.

We will update the blog as she progresses but we are hoping this is a short 2 day stay.

We appreciate all of the prayers and support! Things can always be worse, so we try and put all of these setbacks in perspective even though it’s frustrating and inconvenient to a “normal” life that we want for her, and the family plans we had for the weekend!

Always Fighting,
The Lantz Family
#carolinestrong
#ftgf

Results: 3 Month Progress Scans Today

Caroline had her 3 month post-treatment progress CT and MIBG scans today at Vanderbilt, and we can happily report that she still has No Evidence of Disease!  Both scans showed no signs of any tumors, so we will continue on the current path of daily doses of DFMO (clinical trial drug), to hopefully keep the cancer away!

Caroline will have monthly blood and urine work at Vandy, and then is due back for another round of progress scans in October.

Thank you for all the support!

The Lantz Family
#carolinestrong
#ftgf

Caroline Turns Six!

We had a great weekend celebrating Caroline, who turned 6 years old today!  She was able to hangout with her grandparents and aunt, celebrate with some school friends at the Lifetime gym, eat sushi for the first time in a year, and enjoy cheesecake and lots of whipped cream!  She also got to FaceTime with Maryland family members, and had a bunch of surprise visitors drop by with birthday wishes and treats - we are grateful for each and every one!  Such a happy day!

Love,
The Lantz Family
#carolinestrong

#ftgf