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!

New Tumor in 3-Year Scan

This is a tough thing to post: Caroline's MIBG scan from Thursday showed a tumor near a lymph node in her neck that indicates her Neuroblastoma has relapsed. We don’t know much more than this, and are working with Caroline’s oncology team to coordinate next steps, using ALL known resources and treatments available anywhere to get the best possible outcome for Caroline. We will fight, again.

We have multiple appointments scheduled for next week to get more clarity on the situation and won't have any updates until the end of next week.  In the meantime, we are both home with the kids and plan on having a "normal," fun weekend with our usual activities.  We are completely shocked, devastated and overwhelmed with our own questions for the medical team.  Once we have more information, we will post on this blog ASAP.  Until we know more, please keep our amazingly strong daughter in your prayers and please spread the word...the more prayers the better.

Thank you in advance to the entire care team at Vanderbilt and Beat Childhood Cancer for how much we are about to lean on them for answers/options.

Friends/Family/Co-workers/Community: Thanks in advance for your patience with replies to any texts or emails...we have a lot to process in the coming days. We greatly appreciate all your compassion, help, love and support…we are going to need it!

Mark and Margaret

#ftgf

#carolinestrong

PS - we've already had quite a few requests on how people can help in the meantime:

Donate via GoFundMe

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

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

2-Year Scan Results / End of Clinical Trial

Results are officially in for Caroline’s 2-year scans and tests. ALL of the results are positive: NO EVIDENCE OF DISEASE (NED)!

CT Scan - NED
MIBG Scan - NED
Neuroblastoma Urine Markers - NED
Bone Marrow Biopsy - NED
Hearing Test - Stable
Bloodwork - Stable

Thank you to Dr. Bri and the entire Vandy Medical team for helping us get to this place! Caroline will continue to get various quarterly check-ups and tests at Vanderbilt Children's Hospital for the next couple of years.

Caroline’s clinical trial drug (DFMO) officially ended Sunday night. For 2 straight years, she took 6 pills per day...hard to imagine that she swallowed 4,380 pills...especially considering this was in addition to the 18 months of her standard treatment protocol for Neuroblastoma. 

She is now officially both cancer-free and medication-free!!! It’s surreal to think Caroline has hit every mark we’d hoped for since she was diagnosed in 2017.

For this particular milestone (the clinical trial ending), we’d especially like to thank the amazing leaders at Beat Childhood Cancer Foundation: Pat, Dr. Sholler, Kyle, Savie, AJ, and the entire team. Their tireless research and clinical trials, like DFMO, are literally saving lives. Click here to support their efforts, which are mostly funded by donations.

We’re beyond grateful to the community that has surrounded us over the past 3.5 years; we truly would not have been able to manage without you. Thank you, thank you!

The Lantz Family
#carolinestrong
#ftgf

Celebrating the end of DFMO: 4,380 pills with an "Orange You Glad This Is Over" theme, since Caroline wasn't allowed to have citrus while on the clinical trial.

Audiology Testing

Nuclear MIBG Injection

CT Scan

Walking herself back (per usual!) to be sedated for the MIBG Scan

Waiting for scans on diagnosis day and last day of Clinical Trial...she's come a long way!

Update: Last DFMO Refill

Caroline went to Vanderbilt today for the FINAL refill supply of her clinical trial drug, DFMO.  The trial will end for her on April 17, 2021, at which time she will be completely medication-free!  After two years of taking six DFMO pills each day, this is both exciting and terrifying for us.

In addition to getting the refill meds today, she received blood and urine tests; we are still waiting on those results and should have them sometime next week.  Her next round of scans and tests are scheduled for mid-April, right before completing the clinical trial, so we will update the blog again at that time.

Right now, Caroline is excelling in first grade, taking acting classes, and just wrapped up her first-ever basketball season.  

Thank you for the continued prayers and support!

Team Lantz

#carolinestrong

#ftgf

Last refill of DFMO!

CT Scan Results

Caroline had her follow-up CT scan today, and the results where all good!  The scan showed no issues with the spot that appeared on her liver during her October scans. She remains NED (no evidence of disease) and will continue taking the clinical trial drug, DFMO, until April 2021. 

The next round of tests and appointments will be in April, so we will update the blog after that round.

Thank you for your continued prayers and support!

The Lantz Family

#carolinestrong

#ftgf

Fresh batch of DFMO!

Parent view of the CT Scan

Results: 18-Month Scans / Tests

Caroline had her 18-month labs, tests and scans over the past few weeks.  She got a hearing test, COVID test, blood work, Neuroblastoma urine marker tests, a CT scan, and an MIBG scan. Fortunately, the COVID test was negative, and her hearing is now back to normal levels in both ears (an improvement from her 15-month check-up).

All of her labs/blood work looked fine, and the urine marker tests used for early detection of a relapse showed no cause for alarm heading into the 2 big scans this week.

The MIBG scan showed no evidence of disease and was marked as a "Curie Score" of zero, which is the best possible score for that test. 

Caroline’s CT scan looked ok overall, except for one new “non-specific” 6mm spot in her liver.  The radiologist and her oncology team think it's most likely a non-cancerous Hemangioma, which is defined as:

“A liver hemangioma (he-man-jee-O-muh) is a noncancerous (benign) mass in the liver. A liver hemangioma is made up of a tangle of blood vessels. Other terms for a liver hemangioma are hepatic hemangioma and cavernous hemangioma. Most cases of liver hemangiomas are discovered during a test or procedure for some other condition. People who have a liver hemangioma rarely experience signs and symptoms and typically don't need treatment.)”

The plan to address this new development is to image the area again with another CT scan in 6 weeks, just to make sure it’s nothing more, or getting bigger, changing shape, etc.  We will update the blog again after that scan.  

Obviously we were hoping to get an "all clear" call, and not have to go back for any scans until April, so this is a little unnerving, and waiting another 6 weeks for the CT Scan causes anxiety, but we are thankful the MIBG and other tests looked OK.  This journey has definitely kept us humble and continues to remind us to live for today.

On another note, a HUGE thank you for all the generous donations during September Childhood Cancer awareness month. Caroline and her fundraising partners raised over $3,000 for cancer research! While the COVID lockdown has really put a damper on the ability to do large-scale, in-person fundraisers, cancer doesn’t lockdown or stop, so we are very grateful for the online support during these unprecedented times.  Thank you for the continued prayers!

All The Best,
The Lantz Family

#carolinestrong

#ftgf

Getting IV access, which she had to keep in overnight.

COVID test (required for sedation)

Expert at waiting in Radiology

MIBG Nuclear Injection Prep

MIBG Nuclear Injection

CT Scan - getting contrast injection

CT Scan

Waiting for the MIBG Scan

Always wants to drive herself into the OR/Scans!

MIBG Recovery