Outpatient Immunotherapy and Chemotherapy

Caroline (finally) "made counts" today and was allowed to start treatment again.   She received an immunotherapy and 2 chemotherapies.

It was a VERY long, rough day full of side effects, including: rash, itching, pain, swelling, and worst/scariest of all was plummeting blood pressure that required them to pause treatment twice.  After some additional steroids and fluids, she was able to complete day one of this week’s cycle.

She will return tomorrow for day 2.

Thank you for all the prayers and gestures of support.

Exhausted and off to bed…

The Lantz Family
#carolinestrong
#ftgf

Here's a glimpse of the rash (and this wasn't even nearly the worst of it)...

Treatment Delayed (again)

Caroline's ANC (immune system) was still too low to receive treatment today. She is going to get a daily booster shot this week to try and energize up the slow-to-recover cells. 

She was definitely not happy about another delay...cabin fever has set in and she was mentally prepared to continue her battle today.  Luckily, she's able to work with a homebound instructor, in addition to joining her class via Zoom a few times a day, so we'll continue to lay low, keep up with school and try again next Monday.

Thank you for the continued prayers!

The Lantz Family
#carolinestrong
#ftgf

Ms. Elise was Caroline's homebound teacher in Kindergarten and now 5th grade!

Treatment bumped this week

Caroline went to clinic this morning in hopes of starting the 2nd round of treatment for her relapsed neuroblastoma. Unfortunately, her ANC (immune system) # was too low to be able to safely receive treatment, so she'll try again next Monday...

In the meantime, Caroline will rest at home and try her best to keep up with her school work remotely.  As always, we'll update the blog if there are any changes, or when/if she's able to start treatment again next week.

Thank you for your continued support and prayers,

The Lantz Family

#carolinestrong

#ftgf

HOME

After spending a long weekend at Vanderbilt for fever / fighting off something (undetermined), Caroline was discharged tonight and will now rest and recover at home. Barring any other unexpected issues this week, her next appointment will be Friday in clinic for lab work.

Thanks for all the support and prayers!

The Lantz Family
#carolinestrong

#ftgf

Unplanned Hospital Admission

Caroline spiked a fever late yesterday afternoon, which led us to the Vandy ER for bloodwork and a precautionary IV antibiotic. Once a bed opened up on the oncology floor, she was admitted for continued testing and observation. Her ANC (immune system) is currently at 0.0 which means her body has virtually no ability to fight off any viral or bacterial infections.

She will continue to receive IV antibiotics and will also get an IV Leukine infusion to try and help boost her counts. She spiked another fever around 2:30am, so for now we just wait and hope that she can get fever-free and hopefully go home in a couple days.

Overall, Caroline just feels "yucky" and tired today.

She did ask for an Acai bowl from UberEats, and ate a good bit of that, so we are encouraged that she is still eating.

Appreciate the prayers and continued support!

The Lantz Family

#carolinestrong

#ftgf

Immunotherapy Update

Caroline completed 2 outpatient infusions of Naxitamab this week...experiencing the expected side effects (mostly pain, itching and rash).   She also got bloodwork done while in clinic; her ANC (immune system) really plummeted over the past few days. Being immunocompromised is tricky because any little virus or bacteria can be very dangerous and land her in the hospital, so we'll keep her at home doing online school until we can get her counts tested again next week.

Although she looks and feels ok today, the inside of her little body has been battered by all the treatments over the (almost) seven years, particularly the harsh chemotherapies.  She is eating well/healthy, and seems to be hanging in there mentally (as well as can be expected battling cancer for the 3rd time).

We're so grateful for all the outreach, prayers, meals and support.

The Lantz Family
#carolinestrong
#ftgf

Inpatient Cycle 1 Complete

Caroline returned home this morning from 5 days of inpatient treatment which, included 2 different chemotherapies daily + an immunotherapy on 2 of the days. Overall, she tolerated it as well as can be expected...mostly experiencing nausea, body rash and some pain, but all manageable with medication. She rested in her hospital bed for the majority of the stay, but maintained a good appetite and ate well while in the hospital (thank you for the UberEats and DoorDash gift cards!). She's been feeling ok so far at home, but needs to stay on her medication schedule, focus on staying hydrated and continuing to eat healthy (she already requested a large homemade salad from Dad).

We are expecting a cool, rainy weekend in TN, so she will plan on resting and enjoying time with Hank and the family.

Caroline is scheduled to go back to Vanderbilt on Monday and Wednesday of next week for outpatient treatment (immunotherapy) and lab work.

We really appreciate the hard work of the medical team at Vanderbilt to work out the medication scheduling, in addition to the amazing care they provided to C this week! Caroline was officially the first patient to receive Naxitamab at Vandy inpatient.

Many thanks for all the prayers and ongoing offers of support from friends and family near and far! Special shout out to Michelle Prichard for once again coming down to decorate Caroline's hospital room; we love you MP!

Now off to unpack all our hospital bags and rest up for next week's treatment...

The Lantz Family
#carolinestrong

#ftgf

Revised Treatment Plan for Relapse #2

After consulting with the Vanderbilt medical team (among others), and looking at all safe and reasonable options for care, here is where we have landed for Caroline's treatment plan:

• 9/23 - 9/27: Inpatient Treatment
• Cyclophosphamide (chemotherapy) each day, Mon-Fri
• Topotecan (chemotherapy) each day, Mon-Fri 
• Naxitamab (immunotherapy) on Tues and Thus
  
  
• 9/30 and 10/2: Outpatient Treatment 
• Naxitamab (immunotherapy) only

Caroline will probably lose her hair again, in addition to all the other harsh, common side effects - nausea, diarrhea, fever, immunosuppression, joint pain, cough, exhaustion, etc.  She will most likely be out of school for at least 1.5 - 2 weeks, depending on how she's feeling.

Beyond that, the schedule would be to repeat that same cycle again in 4 weeks, then re-scan Caroline to see if we are getting any positive response. 

Margaret has resigned from her job and will focus on making sure Caroline is getting everything she needs during this very difficult time.  Mark and Andrew will also be there every step of the way to support C as she goes through this ugliness once again. 

Thank you for all the messages of encouragement, prayers, and offers to help!  This all just stinks, and we really appreciate knowing that we aren't fighting this alone.

The Lantz Family

#carolinestrong

#ftgf

Ways to help

#carolinestrong Gear (t-shirts, hats, etc.)

UberEats gift cards (emailed to margaretlantz@gmail.com)

Scan Results - Tumor Growth

Caroline's scans results came back and unfortunately showed growth in the tumor, as well as an additional area of disease in her abdomen.

When we told Caroline the news and discussed potential options this morning, she immediately indicated she still wants to fight, even knowing the treatment options are limited and very harsh.

We're working with her team to decide the next best steps and will update this blog when we have a plan.

We are beyond devastated...and overwhelmed...and really need space to process this blow. We're all exhausted to the core and need to focus our energy on the kids, the best possible outcome for Caroline and keeping our family afloat. Please know that we read all of your supportive texts, messages, etc., but as you can imagine, our responses may be limited right now.

Thank you for the continued love, support and prayers for our family.
~ The Lantz Family
#carolinestrong 

#ftgf

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

Cycle 2 Update

Caroline started Cycle 2 of her antibody treatment today; assuming all goes according to plan, she will get 3 total infusions this week.  Today’s cycle was relatively uneventful and the lingering side effects (irritable from steroid, itching, some pain and hot flashes) are seemingly under control with medication.

Based on how she felt the day after each treatment last cycle, it is unlikely she will go to school at all this week.  We will update the blog again later this week as this treatment progresses. 

Since we last posted, Caroline has started 5th grade and is doing well adjusting to her new school and has really enjoyed seeing old friends and making new!  She was able to enjoy some fun the last couple of weeks, including a great night out at the local county fair.

For those asking about ways to help: 

- Prayers for minimal side effects and maximum effectiveness 
- Amazon Wishlist (click here for link)

The Lantz Family
#carolinestrong

#ftgf

double lumen port access = two pokes

So grateful for the attentive nursing team that helped Caroline during the infusion.

Wiped after infusion...side effects under control with medication.

5th Grader!

Williamson County Fair

Cycle 1 = Complete!

Caroline has officially completed Cycle 1 of her treatment plan for her relapsed neuroblastoma. The side effects from this immunotherapy are brutal. Her biggest struggle has been a full body rash that (per C) makes her skin feel like it's on fire from the inside out. She's also struggling with joint pain. It's torturous to witness; we can only imagine how it feels for Caroline.  It's been an exhausting, traumatic week that we're ready to put behind us.

Caroline has a couple appointments over the next few weeks and will start Cycle 2 the week of August 19th.  Please continue to pray that this treatment is working and that her side effects become more manageable.

Thank you for your continued love and support - the meals and gift cards have been a tremendous help and are greatly appreciated.

The Lantz Family

#carolinestrong

#ftgf

this pic was taken in the middle of the infusion - in addition to it being VERY painful, it also spikes her body temperature and causes joint pain (hence the ice packs and compression gloves)

Margaret had surgery yesterday, so Andrew went with Mark to clinic...it meant so much to C that he was able to go, especially because it's one of his least favorite places...

Infusion 1 Complete!

Caroline completed her first immunotherapy infusion today; she was able to get through with minimal side effects.  She had some pain and discomfort during the treatment but it was successfully managed with IV pain medicine.  Every child reacts differently to these treatments, but relative to what we've been reading, she did very well!  Her reactions/side effects can change during future infusions, we are pleased with how her body responded.

As we move into the evening hours at home, Caroline is having some additional pain in her legs, as well as a full body rash (both common from this treatment).  So far, we've been able to manage both the pain and itching with meds at home.

Major kudos to everyone on her medical team at Vanderbilt.  Caroline is officially the FIRST patient at Vandy to ever receive this medicine!  Her team worked diligently to prepare for any and all potential risks/side effects, and it showed.  We're beyond thankful to the doctors, nurses, child life specialist, and pain management team for being ready to roll today.

Caroline will now get a day to rest/recover at home before her next scheduled infusion on Wednesday.  

We will continue to update the blog along the way...

Thank you for all the well wishes, meals, thoughtful gifts and prayers!

The Lantz Family
#carolinestrong

#ftgf

Starting the 1st dose of Cycle 1

Port Placement, Bone Marrow Biopsy, CT Scan / Ways to Help

Today was a very long, full day at the hospital for Caroline.

CT Scan Results: showed slight growth in the tumor size from her last scan 3.5 weeks ago; no other disease was identified on today's scan.

Bone Marrow Biopsy: her team is confident they got a good sample for testing; we expect results back early next week.

Port Placement: Caroline had a double-lumen power port surgically placed under her skin, on the upper right side of her body, which will be used for all upcoming treatments and blood work.

The plan is to rest and recover at home this weekend and then begin the new antibody/immunotherapy treatment Monday morning. 

We've so grateful for the outpouring of love, prayers and requests for ways to support our family as we walk this path again...we also really appreciate your patience as we worked through Caroline's treatment options. Now that we have a plan, we've been able to create a list of things that will be the most helpful to our family as we move forward.

Gift cards (digital gift cards can be emailed to margaretlantz@gmail.com) 
- Walmart (groceries & gas)
- Publix (prescriptions & groceries)
- Visa
- Amazon

- UberEats

- DoorDash 

MealTrain (click here for link)

Amazon Wishlist (click here for link)

Thank you for the amazing support and continued prayers,
The Lantz Family
#carolinestrong

#ftgf

post-op

Treatment Start Date

We (finally) have a plan and start date!  Caroline will begin treatment for her 2nd relapse of Neuroblastoma with the following timeline:

July 17th-21st: oral medication and shots to prep her body for treatment

July 19th: port placement, a CT scan to use as a start of treatment benchmark, and a repeat of the bone marrow biopsy that was inconclusive a couple weeks ago

July 22nd: begin a cycle of an antibody/immunotherapy that she has not yet received.  It is a VERY painful treatment, with the potential for many other side effects.  We're hoping it can be managed in clinic/outpatient with various medications.  

For now, the plan is to do a couple cycles of this new treatment and then re-scan her again in September.   The results of that scan will guide us on potential next steps in her treatment plan (more antibody, radiation, other potential therapies, etc.).

We really appreciate all the offers to help and your patience as we've been slow to respond - the past few weeks but been intense...most days ending with more questions than answers.  Our friend Michelle is working on a meal train - we will post the link on the blog for anyone who would like to help in that way. 

Thank you for all the support and prayers.  Please keep them coming!

The Lantz Family

#carolinestrong

#ftgf

Hoping the "lucky" double cherry that she pulled today comes through for her!

MIBG Scan / Update(ish)

Caroline's latest updates: 

~ the spot that appeared on Caroline's CT and PET scans last week also show up in her MIBG scan today, which confirms Neuroblastoma; all 3 of the scans picked up the single spot, which is also the same location as her 2022 relapse.

~ the Bone Marrow Biopsy sample from last week was inconclusive in determining if she has disease in her marrow, so Vanderbilt will repeat that test on 7/19.  Her bone marrow is really "beat" up after so many years of treatment, so not only is it hard to get a really good sample, it's also very painful for a few days following the procedure.

~ We've spent countless hours researching and consulting with multiple other hospitals and specialists across the country regarding potential treatments, clinical trials, etc.  We are in the process of getting a formal second opinion from Memorial Sloane Kettering in NYC and hope to hear their feedback sometime next week after they present Caroline's case to their internal Tumor Board.  

~ Caroline's case was presented to Vanderbilt's Tumor Board this afternoon and we are in continuous conversations to discuss their proposed treatment options.

Nothing about this process is quick, comforting or easy to digest...we've officially added "overwhelmed" to our shock and devastation.  We are hoping to have a plan in place by the end of next week and will post the update/plan on the blog as soon as we've decided.  In the meantime, thank you for all the prayers and offers of support.

The Lantz Family
#carolinestrong

#ftgf

90-minute MIBG scan laying perfectly still without sedation - she's a rockstar!!!

Quarterly Scans - Relapse #2

We received horrible news yesterday: both routine imaging scans (PET and CT) showed a spot in Caroline's chest that appears to be relapsed Neuroblastoma. It's in the same area as her first relapse in 2022. There is no standard of care for this, so we don't have any more news at this time.

Next steps:

- bone marrow biopsy tomorrow (6/27)

- meet with her medical team on Friday (6/28) to review potential treatments or clinical trials available locally and around the country

- MIBG injection and scan (7/2 and 7/3 respectively) 

We will update the blog as we get info along the way, but for now, please just pray for our beautiful little girl.

The Lantz Family
#carolinestrong
#ftgf

can you tell she'll officially be a "tween" in a couple weeks with that side eye?

March Scan Results / Podcast

Caroline recently had her quarterly scans and tests to check for any signs of potential recurring Neuroblastoma disease. Fortunately, she still remains No Evidence Of Disease and will continue taking her DFMO maintenance medication daily!  We're so grateful for the continued thoroughness and diligent work from her medical team at Vanderbilt (and Levine).

Caroline and our family have some busy months ahead, as we are honored to participate in various fundraisers in TN and FL for Vanderbilt and the Beat Childhood Cancer Foundation.  We'll post updates and pictures on the blog in the coming months!

In other news: in April 2023, Margaret recorded a podcast for our friend, Jennifer Reid, who has worked hard for the past year to ink a deal with iHeart Radio to get her 'A Woman Like You' series officially off the ground. It finally launched earlier this year, and Margret’s episodes were just released.  You can check out Margaret’s 2-part episode (focuses on cancer and mental health) by clicking on the links below:

Click here to watch Part 1

Click here to watch Part 2

Thank for for the prayers and support.  We'll keep moving forward...
The Lantz Family
#carolinestrong

#ftgf

IV for PET Scan

CT Scan

Prepping for biopsy

Post-biopsy

April 2023 - Margaret filmed the podcast during Caroline's 14th cycle...

Scan Results / DFMO Approval

We had a rather stressful holiday season that consisted of multiple visits to Vanderbilt and a trip to Levine Children's Hospital in Charlotte.

• December 19th: Labs, CT Scan, PET Scan, Clinic visit and and a blood transfusion @ Vanderbilt

• December 20th: we received news that the PET scan was clear, but the CT scan showed a spot of concern on the bone in Caroline’s pelvic area.  After discussing with Caroline's medical team and a surgeon, we decided to move forward with a biopsy to rule out another relapse.  As an extra precaution, they also decided to do a bi-lateral bone marrow biopsy while Caroline was already sedated.

• December 22nd: Traveled to Levine Children's in Charlotte, NC for a Clinic visit and DFMO refill

• December 28th: Caroline was sedated for a bi-lateral bone marrow biopsy in her lower back and a CT-guided biopsy of the concerning spot on her right pelvic bone

• January 3rd:  After delayed test results due to the holiday, we received news that BOTH BIOPSIES ARE CLEAR of any cancer. 

After almost 3 weeks incomprehensible anxiety and fear, we are able to exhale a little and try and reset as we move into the new year.  We're so thankful for Dr. Smith and the entire medical team for acting so quickly to get us clarity!

On another note, we are thrilled to celebrate that after a decade, the FDA approved DFMO (now called "iwilfin") for maintenance treatment of Neuroblastoma.  Soon, the drug will be available for all doctors to prescribe anywhere in the United States.  Special thanks to Dr. Sholler, Pat Lacey and the entire BEATCC team for working with US WorldMeds and the FDA to get this done!  The approval of DFMO is the first pediatric cancer drug ever to approved without a double blind placebo study.  Click here to read all about the precedent-setting approval...simply amazing!

Wishing you all peace and health in 2024,
The Lantz Family
#carolinestrong

#ftgf

Walking herself back to surgery

In recovery, waking up from sedation

Leaving Levine Children's with DFMO!

DFMO - now called "iwilfin"

6 Year Cancer-versary

On this exact day - Black Friday, November 24, 2017, Caroline was diagnosed with Stage IV, High-Risk Neuroblastoma.  6 years later, November 24, 2023, another Black Friday, we took a drive down to the hospital for the annual "Snowman picture."  

Team Lantz - still standing 6 years later...

Thank you for your continued love, support and prayers for our family!

#carolinestrong

#ftgf

Updates: Scans, Charlotte/Clinical Trial, Hearing Loss and "Regular" Life

It's been a busy 3 months since we last updated the blog; Caroline has lived a lot of life!

Starting with the best news, her most recent scans last week continued to show NO evidence of disease!  

Caroline has been on the high-dose DFMO clinical trial drug since the end of June, and has overall been able to tolerate it well.  She's required to get monthly lab work at Vanderbilt for monitoring; each time showing her hemoglobin number trending downward...a common side effect for DFMO.  She got sick (common cold) a few weeks ago, and required a hospital visit and a blood transfusion because her hemoglobin was below the threshold.  She also recently started struggling with her hearing, another common side effect of high-dose DFMO.  In the past 3 months, Caroline actually lost about 50% of her hearing from baseline.  After discussing the impact of side effects with her clinical trial oncology team at Levine Children's Hospital, they've reduced her daily dose by 2 pills...so she's now taking "just" 20 pills per day.  She is being fitted for hearing aids this week, and we will re-check her hearing in a month to re-assess.  We are hoping the hearing loss is temporary while on the trial drug, but there is no guarantee either way. Unless otherwise needed, her next scheduled scans at Vanderbilt and visit to Levine Children's will be towards the end of December.  In the meantime, she will continued to be monitored monthly with lab work.

Outside of the medical updates, Caroline has really being thriving!  She turned 10 in July, celebrating the milestone with all of her cousins in Maryland.  A few weeks later, she received an amazing carnival celebration from the Dreams & Wishes Foundation.  Caroline had the best time, and the party truly left us speechless.  Soccer started in August, and she's really found her niche as the goalie (aka "Keeper")...most games resulting in a shut out!  A local news reporter, Forrest Sanders, did a story featuring Caroline's Dreams & Wishes Party, as well as her playing soccer: click here to watch the video!  She's doing well in school, experimenting with with a slime business and hanging out with friends.  

As for the rest of our family, we're finding our footing and falling back into as much of a "normal" life as possible.  Thank you for the continued prayers and support...we're so grateful.

The Lantz Family

#carolinestrong

#ftgf

3-months post-treatment PET Scan = NED!!!

10th Birthday Party in MD with cousins

Birthday Girls! 

(birthdays one week apart)

Dreams & Wishes Party

Caroline leading Buddy the miniature horse during the Franklin Polo Match benefitting Angel Heart Farm

Luke Bryan Concert

"Slime Time with Caroline" at the Green Hills Park Children's Market

Nona & Papa marking "carolinestrong" on the Route 66 Cadillac Ranch Art Install

Mark's 50th!

Legal driver - pray for us!

We love Vanderbilt!

DFMO Clinical Trial

Caroline and Mark traveled to Levine Children's Hospital in Charlotte, NC this week to enroll in the only "expanded access" DFMO clinical trial currently available.  "Expanded access," also called “compassionate use,” allows patients with serious/life-threatening conditions to gain access to investigational medicine for treatment when no alternative therapy options are available, and they aren't eligible for the drug though any other trials.  Although it's been a long, administrative-heavy process to get access to this drug, we believe DFMO will give Caroline the best chance for remaining NED (no evidence of disease).  

Caroline enrolled in the DFMO clinical trial at Vanderbilt in April 2019, immediately after completing the treatment protocol for her original diagnosis.  She took 6 pills per day for 2 years...remaining cancer-free while taking the drug, and then relapsing within a year of stopping the medication.  This time, Caroline will be getting "high-dose DFMO," which requires her to take 22 pills per day for 2 years (that's 16,060 pills!!!).  DFMO is only available within clinical research trials, and only for a 2 year period.  Unless the FDA approves this drug as a part of standard treatment and/or maintenance post-treatment, Caroline will have to stop taking DFMO in June 2025.

Vanderbilt and Levine have both been amazing through this process, and thankfully are willing to work together to minimize our travel.  She will continue to go to Vanderbilt for monthly labs/tests and progress scans every 3 months, but will be required to travel to Levine to visit their clinic periodically to get the clinical trial medication.

Many thanks to Dr. Giselle Sholler, her team, and the Beat Childhood Cancer Foundation for remaining steadfast in their search for a cure to give these kids the best chance at life.

We will continue to post on this blog as there are updates.  Thank you for your never-ending support, love and prayers for our family.  Cancer sucks.

The Lantz Family

#carolinestrong

#ftgf

Caroline and Dr. Sholler

3 months of DFMO

(part of) 1st Dose - Let's Goooooooo!