Starting Cycle 3

Caroline made her ANC count requirement this morning and was admitted inpatient at Vanderbilt for Cycle 3 of her treatment for relapsed High-Risk Neuroblastoma. Today she will receive 2 chemotherapies along with various other drugs for side affects.

Tuesday through Saturday, she will receive both chemos + an antibody immunotherapy drug which will be accompanied by a 24-7 Dilaudid drip for pain management.  We are hoping that she gets through this week with minimal side affects and hopefully can get home late Saturday. 

Thank you for all the prayers and support!

The Lantz Family

#carolinestrong
#ftgf

#mood upon arrival

Home from Cycle 2

Caroline completed Cycle 2 of her chemo-antibody therapy, and was discharged on Saturday. She’s home resting and recovering from the harsh side effects of treatment. Unless she needs to sooner, her next clinic appointment is on Friday (5/27). She has progress scans and a bone marrow biopsy on 6/1 and 6/2. We will update the blog after we get the results from her scans. Thank you so much for your prayers and support.

The Lantz Family
#ftgf
#carolinestrong

How she spent most of the time inpatient.

Heading home...too weak to walk.

Rashes from the antibody leaving her system.

One shot per day for 7 days post-inpatient treatment.

Recovering on the couch with her BFF, Hank.

Cycle 2 Treatment Underway!

Caroline started Cycle 2 today - two chemotherapies (Irinotecan and Temozolimade) each day for five days. The antibody therapy (Dinutuximab) will be added tomorrow - it runs for 20 hours per day through Saturday. The antibody causes extreme pain, so starting tomorrow until we leave, she will be on a constant dilaudid drip 24/7.

Assuming all goes well, Caroline should be discharged this weekend. The other main side effects from this treatment are: rash, nausea, diarrhea and fever.

Please pray for an uneventful week, and that this treatment is working to kill off all of the Neuroblastoma cells in her body. She will get her progress scans on June 3rd.

All the Best,
The Lantz Family
#ftgf 

#carolinestrong

Donate Blood in Caroline's Honor

#carolinestrong T-Shirts

Contribute to Medical Expenses via GoFundMe

Family Meals via UberEats (email to margaretlantz@gmail.com)

Misc. Treatment Needs via Amazon Gift Card (email to margaretlantz@gmail.com)

Caroline was able to snag the "movie theater" set-up today...projector movies and theater snacks all night!

It's been a busy 2.5 weeks at home for Caroline!  The first few days of side effects from the treatment were ROUGH and hit Caroline really hard.  She ended up getting an NG tube to assist with taking medication.  She also started to lose a lot of hair over the past few days, and asked us to shave her head.  So many changes!

Caroline has been able to go to school most of last week, and all this week.  After school, she has been going fishing with her brother and really loves it.  Cycle 2 is scheduled to begin Monday (5/16)...we will post an update from the hospital.

Thank you for the constant outpouring of love, support and prayers; we are so grateful you all are helping us walk through this again.

Fighting the good fight,

The Lantz Family

#carolinestrong

Donate Blood in Caroline's Honor

#carolinestrong T-Shirts

Contribute to Medical Expenses via GoFundMe

Family Meals via UberEats (email to margaretlantz@gmail.com)

Misc. Treatment Needs via Amazon Gift Card (email to margaretlantz@gmail.com)

Cycle One Inpatient Complete - Home

Caroline finished her inpatient stay for Cycle 1 of treatment for relapsed Neuroblastoma today! She's at home resting and recovering from a brutal 6-night stay at Vanderbilt. The side effects have been nausea, diarrhea, occasional rash, fever, loss of appetite, overall pain, and discomfort.

In the past week, she's had her port placed, a bone marrow biopsy, 2 chemos each day for five days, and the antibody treatment infused over 20 hours per day for four days.  Beginning today, for the next 7 days, Caroline will receive Leukine shots to help her immune system recover. She is also on more than a half dozen other medications to help with the treatment side effects and infection prevention.  Cycle 2 will start in about two weeks (mid-May), with weekly outpatient clinic visits to check her counts in between.

She will spend the next few days recovering at home, and we are hoping she feels well enough to get back to school soon, although she'll have to limit her physical activity due to the port (located in the upper right side of her chest), and she also had to stop playing spring rec soccer.  

Please continue to pray / send good vibes / hope for the best possible outcome for Caroline. In addition to needing the treatment to kill off these aggressive cancer cells spread throughout her little body again, she is really just so sad.  This time around she is more aware of what she's "missing," and she has a lot more "big" feelings about what's going on.  Although we have faith and will go to the ends of the earth to fight this, we all know too much and are scared.

We are so grateful for her amazing care team at Vanderbilt…as always, they have been gracious, patient, and compassionate during this entire process.

As we mentioned before, we have received some packages in the mail without sender information…please know we appreciate every one of you, and the outpouring of love and generosity! We know we can’t do this alone, and there is much comfort for us in numbers.  We definitely can feel all the love and support, and know Caroline has an army from all over behind her!  

The Lantz Family
#carolinestrong
#ftgf

Donate Blood in Caroline's Honor

Contribute to Medical Expenses via GoFundMe

Family Meals via UberEats (email to margaretlantz@gmail.com)

Misc Treatment Needs via Amazon Gift Card (email to margaretlantz@gmail.com)

Recovering at home

Beside EKG after some chest pains on night 5

Bedside X-Ray after chest pains on night 5

How she spent most of her time inpatient...

Caroline got a VERY special visit from Squid, the hospial's emotonal support dog.  He spent almost an hour laying in bed with her on one of the hardest days of the cycle.  As soon as she saw Squid coming into the room, her face lit up - and words cannot describe how much seeing her smile meant!  Thank you Mars Petcare and the Better Cities for Pets Program for sponsoring Squid at VUMC!

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!

Results: One-Year Scans

Caroline had her 1-year scans this week, and the CT Scan, MIBG Scan and lab markers all show NO EVIDENCE OF DISEASE!!!  To say we are beyond thankful is an understatement!  She will continue to take her DFMO clinical trial drug (to hopefully prevent relapse) for the next 13 months, and will be re-scanned in 6 months.  With the flu season and COVID-19, we're hoping she can remain healthy through the season.

We're so grateful to her medical team that helped get us here, and who continue to work hard every day for these families!  Also a huge shout to all the folks at BeatNb who are fighting so hard for these kids to be able to get access to DFMO, which shows amazing promise in battling this awful disease.

Be safe out there!
The Lantz Family

Caroline being injected with MIBG radioactive contrast.

We Love Vandy!

Audiology test - she is showing signs of mild hearing loss, so we will re-check in 3 months.

 Waiting...

CT Scan 

 #carolinestrong

 Peace out! Walking herself back to the MIBG Scan.

 Fresh, 3-month supply of DFMO.

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!