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...

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

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

Delayed Cycle 11 and Christmas Magic

Caroline didn't make counts this week to be admitted for Cycle 11.  She has scans on January 17th, so we're going to give her body a rest until those are complete, and try again for Cycle 11 inpatient admission the following day (1/18/23).  After 10 cycles, and in the middle of cold and flu season, her body is really struggling to recover between cycles.  We'll update the blog when we have scan results and an update for admission.

In other news, our prayers for Christmas magic were answered!  After a very horrible Cycle 10, Caroline was in rough shape physically and mentally...but on December 20th, Tractor Supply Co. granted her wish - a shopping spree for un-adoptable dogs!  It was truly an incredible day.  The generosity of Tractor Supply Co. was beyond words...giving Caroline a $3,000 shopping spree at the South Franklin store, as well as $1,000 to the Heaven Can Wait Animal Rescue (the animal sanctuary Caroline selected to receive the toys from the shopping spree) and Angel Heart Farm (the equine therapy foundation that coordinated the wish).   Click here to see the full news story with video...

Unfortunately, Caroline's hair started falling out again.  After a week of hair all over the place, she made the decision to shave her head again today.  She's the bravest girl we know!

Wishing you all a healthy and peaceful start to the New Year,

The Lantz Family

#carolinestrong

#ftgf

PS - For those asking, here is the link to get #carolinestrong apparel.  Thank you for the continued support!

"Gnome" Place Like Home for Halloween!

Unfortunately, Caroline didn't make counts again today. She was more than happy to get bumped - now she can celebrate Halloween, Book Character Day at school, and a field trip this Friday.

Although it's not entirely unusual for her to struggle with recovery in-between cycles (especially after so many), we are at a point where her treatment going forward will most likely need to be adjusted. After consulting with Caroline's team, one of her chemotherapies (Temodar) will be dose-reduced by 25%. This is probably the drug that is hitting her too hard.

We will go back to clinic again on Monday (11/7) for lab work, and she will either be admitted for Cycle 9 of treatment if her counts are high enough, or if they aren't high enough, she will undergo a bone marrow biopsy to see if there is anything else more alarming going on ~ stay tuned next week...

Thank you for your continued prayers and support!

The Lantz Family
#carolinestrong
#ftgf

Clinic Costume #2 - Twinning Gnomes - Dad and C.

Clinic Costume #1 - "Jason" getting vitals.

"Junie B. Jones" heading off to school!

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!

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 6 Underway

Caroline was admitted today for Cycle 6 of treatment to fight her relapsed Neuroblastoma; some side effects have already hit hard. Long, rough first day for all…

Thank you for your prayers and support - much appreciated!

The Lantz Family

#carolinestrong

#ftgf

Cycle 6 Delayed

Caroline didn’t meet the minimum bloodwork requirements when we went to clinic this morning to get admitted for her next round of chemo/antibody...her body is just pretty beat up from the past 5 rounds of treatment.  We will try again next Monday.

Thanks for the continued prayers and support!

The Lantz Family 

#carolinestrong

#ftgf

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

Progress Scans - Results

Caroline just concluded 2 long days of testing at Vanderbilt: labs/blood tests, audiology testing, a PET scan, a CT scan, and a bone marrow biopsy.

We are relieved to report that the results are all positive. She had 4 main areas of concern on the original scans in early April.  After 2 cycles of treatment, 3 of the spots are now essentially gone, and the 4th tumor shrunk by about 60%.  Additionally, her bone marrow biopsy detected no active Neuroblastoma cells.  Caroline will continue the same protocol for up to 15 more cycles: 2 types of chemo and antibody while inpatient for a week, followed by 2 weeks at home to recover/clinic check-in appointments...2 down, 15 to go!  It's still a very long road ahead, but we are celebrating the small wins and will continue to fight alongside her. 

Assuming Caroline's "counts" (ANC #) meets the minimum requirement to receive treatment, she will be admitted on Monday (6/6) for her 3rd round of treatment; if her counts aren't high enough, she will wait a week and be admitted on the following Monday/when counts recover.  We will post an update on the blog.

We are thankful for all the meals, prayers and support from friends, family and friends of friends...and a HUGE shoutout to the medical team at Vanderbilt for helping us work through this once again.

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)

In the sedation room ready for her bone marrow biopsy.

Audiology testing.

CT Scan in progress.

Reaction after finding out the cycles are working!

Super special visit from Uncle Paulie!

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!

More Tough News

Caroline's bone marrow biopsy came back showing evidence of disease. We are deflated, but not defeated. It's such a helpless feeling to watch your “visually” healthy and happy child have such an aggressive cancer taking over their body. Again.

Today is Day 2 of Cycle 1: 2 chemos and an antibody therapy. The chemo side effects hit her hard yesterday, but luckily, she was able to get medication to counteract it...although it made her feel out of sorts and yucky all day. Day 2 of Chemo started this morning at 6:30am, and it’s mind-blowing to think that she’s already received eleven medications in less than 4 hours…with lots more to come. The antibody therapy is extremely painful - it runs over 20 hours and is combined with a constant drip of Dilaudid, a few “pre-meds" (Tylenol, Benedryl, Zofran, Pepcid, Gabapentin and an antibiotic) to prep her body for the drug, as well as various other medications over the 20 hours to address side effects. She’ll basically be connected to IV medications from now until we leave.

Shout out to Caroline’s new friend, Zack, who she met at the Preds game 2 weeks ago. She taught him about hockey, and in return he offered to help design and launch a t-shirt campaign through his merchandise company. We really appreciate all the love and support from his team. If you would like to get a #carolinestrong t-shirt, they are now available by clicking here.

We’ve also listed other ways you can support below; we’re beyond grateful.

Praying for a miracle,
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)

Day 2 - Cylce 1

Zack and friends with the Lantz Crew...GO PREDS!!!

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!

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!

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