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

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...

Scan Results - Cycle 11 Admission

Caroline had 2 scans to follow-up on her December readings that where inconclusive due to RSV inflammation in her midsection.

Todays scan results:

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

PET Scan:  No evidence of malignancy.

We are obviously thrilled that Caroline is still beating this disease (again), and it gives us all a little bit of energy and hope as we continue onward with this long and exhausting treatment plan.

Assuming her counts are ok, Caroline will be admitted tomorrow (Wednesday) for Cycle 11 (of 17) of chemotherapy and antibody.  The next 6 days will be rough, but we are just glad that she can continue with her treatment.

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

The Lantz Family
#carolinestrong

#ftgf

Admission Delays

For the second week in a row, Caroline’s admission has been delayed because her lab work isn’t meeting the minimum blood count levels for her double chemotherapy and antibody treatment. She didn’t mind too much last week, but today she left feeling sad because getting bumped out another week means she may miss celebrating Halloween at home, if her counts are high enough to be admitted. We went through this back in 2018 — she got bumped a few weeks in a row for low counts. Most likely, her bone marrow cells are just too beat up from treatment, and struggling to recover. Other than that news today, Caroline has been feeling well and is her normal, energetic self.

It’s hard to continuously re-arrange weekly plans when this stuff happens, but we forge ahead knowing things can always be worse…

Thank You for the continued thoughts and prayers!

The Lantz Family
#carolinestrong

#ftgf

Cycle 7 Update

Caroline was discharged yesterday after being inpatient all week for Cycle 7.  Although she experienced all of the typical side effects, the cycle overall was "uneventful."  We're always grateful for the thoughts and prayers!

Home in time for Ravens' Kick-off!

Port / Biopsy / Cycle One

 A video message from Caroline:

Tomorrow is a big day...Caroline will go under anesthesia to have her central line (port) placed, get a bone marrow biopsy from her lower back, and then she will be admitted to the Oncology floor at Vanderbilt Children's Hospital to begin her first cycle of chemotherapy.

A recap of the cycles: 2 chemo drugs + 1 antibody drug while inpatient over 5 nights/6 days, home to recover for two weeks – including daily shots to recover her immune system, then repeat again.

Please pray that her body responds to this therapy, and that it immediately starts to kill off the cancer cells in her body!

Many thanks for all the prayers, outreach, love, and support...it's go time!

The Lantz Family
#carolinestrong

#ftgf

***T-Shirts are almost ready…we will post the link as soon as we have it. 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)

A huge “thank you” to those that have sent Caroline gifts…many arrived without the sender's name, but we are so grateful!

Photo Credit: SK!

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!

Hockey Fights Cancer Night

It's been a while since we've updated the blog - life has been "normal," and we have a true appreciation for the routine and monotony of regular life - but we wanted to share something awesome that we were able to be a part of last night!

Caroline was asked to represent Monroe Carell Jr. Children's Hospital at Vanderbilt for the Nashville Predators' "Hockey Fights Cancer Night."  She was actually asked to participate last year, but was too sick, and in the hospital.  However, last night she was feeling great and able to help bring awareness to pediatric cancer, along with other oncology friends (some survivors and some in active treatment).  They all got to particiapte in a wide variety of pre-game activities.

Caroline was gifted a personalized jersey with her last name and the year she was diagnosed, had her picture taken with Flashes of Hope photography, and was then led down to the locker room.  She was selected to be the hype girl and open the doors to greet the Predators players as they headed out to the ice (video below).  Graciously, they also included Andrew in that part of the festivities; he said it was one of the best nights of his life!  After fist-bumping all of the players, Caroline got to watch the team warm-up against the glass, and then accompany team captain, Roman Josi, on the ice for the National Anthem!!!

All of the kids and their families were treated to box suites, where they cheered on the Predators in a nail-biting game: the Predators won the game in sudden-death overtime, with 8 rounds of a shoot-out!  It could not have been a better ending to a wonderful night for our family, but most importantly, the Predators fans donated over $51,000 for Cancer research at Vanderbilt, from collections made during the game!

We want to thank the groups and friends that made the night so perfect for us all: The Nashville Predators, The Nashville Predators Foundation, The 365 Pediatric Cancer Fund, Pekka Rinne, Monroe Carell Jr. Children's Hospital at Vanderbilt's staff and medical team members, Tracy and Buddy from Angel Heart Farms, Flashes of Hope, the Larsen Family, and Caroline's grandparents for coming out to support us!

Overall, Caroline is doing really well these days,  She is still loving Kindergarten and American Girl Dolls.  Her one-year progress scans will be some time in April, and we will certainly update the blog with results.  Thank you for the continued prayers for clear scans!

Super Fan

 Buddy from Angel Heart Farms

Twins

 Family

 Amazing!

 Gnash

 Pekka Rinne

 So close!

She made the big screen - in the middle with Roman Josi! 

 We love Vandy!

Champ!

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

HOME!

Caroline was discharged from Vanderbilt tonight and is already feeling MUCH better!  She will be on an oral antibiotic for 12 days, but other than that, she has no restrictions and can get back to enjoying the rest of her summer.

Thank you for all the prayers!

The Lantz Family
#carolinestrong
#ftgf