Plan of Attack

This week, we met with our Vanderbilt medical team, as well as consulted a few others, to discuss next-step scenarios to combat Caroline’s stubborn disease.

We want to be clear: none of our “options” at this time are great…and none are definitive, easy, or a sure path to remission. That said, we did the best evaluation we could with the information available around this specific type of recurrent neuroblastoma.

Caroline was active and attentive in all the conversations; she very much helped us decide the path forward.

After thoughtful discussion and consideration, we've decided on a plan that will consist of 4 oral medications (2 chemo, 2 non-chemo), that can all be taken at home, and will run in 42-day cycles. Assuming she tolerates all the drugs ok, she will be in clinic weekly for labs, and then will get progress scans in about 60 days (mid cycle 2).  She started the new regimen today.

Caroline is currently not experiencing any pain in either of the boney disease spots in her body. So, for now, she will be able to attend an overnight oncology camp, and hopefully enjoy a bit of her summer with family and friends.

We really appreciate all the hard work our Vanderbilt team put in this week (and always!), along with thoughtful consults with our friends and partners at the Beat Childhood Cancer Foundation.

Please keep Caroline on your prayer list!

So grateful for the continued support,
The Lantz Family
#carolinestrong
#ftgf

Update: Scan Results

Caroline had a CT and PET scan today to check the status of her disease, after completing 2 rounds of the clinical trial drug combination of Naxitamab + Tipifarnib. Unfortunately, we did not receive the news we were hoping for...the spot in her pelvis has grown in size, and a new spot is now appearing along the femur. Because the disease did progress, we will be un-enrolled in that trial and are back in the hunt for the next potential, life-saving option.

This is a lot to process, and a lot to research... tough decisions need to be made in the coming days and weeks. We will update the blog again once we have an actual plan forward.

In the meantime, thank you for all the continued prayers and support.

Love,
The Lantz Family
#carolinestrong
#ftgf

Mid-cycle 1 Update

Caroline is currently in the middle of her first cycle of the Naxitamab + Tipifarnib Clinical Trial. She completed the infusion portion on Friday, 4/24, but had a difficult recovery and ended up back at the hospital the following Monday, 4/27. After receiving supportive medications, fluids, and a few adjustments to her daily medications, she was able to turn the corner—and even made it back to school the very next day.

She is now continuing the oral inhibitor medication (Tipifarnib) twice daily at home and was seen in clinic again this morning. Aside from some nausea, she has been doing really well.

Caroline will return to clinic next week for continued monitoring, with her next cycle currently scheduled to begin on 5/18.

Thank you for your patience with the delay in updates, and thank you, as always, for your continued prayers and support.

All the best,
Team Lantz
#carolinestrong
#ftgf

Dinner request: a personal Crawfish Boil @ Cajun Steamer!

Quick Update...Treatment Underway

Day 1 of Cycle 1 is in the books: Tipifarnib + Naxitimab (+ loads of meds to address side effects).

Caroline tolerated the treatment rather well, thanks to careful pre-planning by her care team at Vandy.

Since getting home, she's had pain, rash, itching, and swelling.  We're hoping she can get some rest tonight and feel better in the AM.  

She will have 2 more treatments this week (Wednesday and Friday)...unless we run into anything unexpected, we will update the blog at the end of the week.

Thank you for the continued prayers!

Team Lantz

#carolinestrong

#ftgf

Treatment Plan (Finally)

Caroline has officially met the bloodwork requirements to begin a clinical trial for her fourth fight with Neuroblastoma.

She will start outpatient treatment on Monday at Vanderbilt, receiving a combination of two drugs—one taken orally (an inhibitor) and one administered intravenously (an immunotherapy).

The known and potential side effects include:

• Severe pain from the antibody infusion
• Body rash
• Low blood pressure
• Low oxygen levels
• Neutropenia (a compromised immune system)
• Nausea
• Exhaustion

As far as we know, these treatments should not cause hair loss, which has been Caroline’s “silver lining.” We will once again work closely with her care team to manage and treat side effects as effectively as possible. The infusion portion of treatment carries significant risk—particularly related to blood pressure and oxygen levels—so she will be closely monitored throughout each session. She will also undergo additional testing during this protocol, including EKGs, echocardiograms, urine tests, frequent bloodwork, etc.

The first month of treatment will include a cycle total of 14 days of oral medication 💊 + 3 days of antibody infusion (immunotherapy). She will also receive 5 days of injections at home to help her immune system recover.

Caroline will repeat this same schedule the following month, with disease-status imaging planned for mid-June.

The waiting has been an incredibly anxious time for all of us, so we are very relieved to finally have a plan in place.

We are deeply grateful to the Beat Childhood Cancer (BeatCC) Foundation and Research Consortium for developing these trials, giving kids like Caroline more options in fighting this awful disease. Thank you as well to our friends and family who have supported BeatCC over the years—your generosity truly helps drive critical research and save lives.

We are also incredibly appreciative of our entire Vanderbilt team for partnering with BeatCC to bring these trials to our home hospital. Caroline will (once again!) be the first patient at Vanderbilt to receive this treatment.

Thank you all for your continued support and prayers—we feel them every day.

Love,
The Lantz Family
#carolinestrong

#ftgf

Celebrating "Senior Night" at Andrew's lacrosse game this week!

Update(ish)

Although it's been two weeks since we discovered the relapse, and we've been doing a ton of "stuff behind the scenes," we don’t have many updates right now.

What we know right now:

• The attempt to biopsy the spot on her pelvis was unsuccessful due to the size and because it only showed up on her PET scan, not on the CT, which is what they primarily use to guide the biopsy needle. Therefore, at this time, we have no tissue to send off for sequencing / analysis for any potential precision medicine recommendations.

• The bone marrow biopsy from her lower back was negative for Neuroblastoma - good news / bad news. It hasn’t spread to her marrow yet, but that also means no biopsy results for disease sequencing and targeted therapries.

• Last, but definitely not least, the treatment trial we are trying to enroll her in has strict FDA requirements for labwork ranges/results, which Caroline's body has been unable to meet (despite 4 different lab draws at 2 different locations), so we are not currently able to enroll her.

What all of this means: for now, we wait.  We will test her again next week to see if she qualifies...if she does, we will enroll her immediately...if she does not, we'll have to pivot to another plan.

We will update the blog as soon as we have any relevant information.  We're still all struggling to process the news of the relapse, in addition to all of the setbacks.  We're so grateful for the messages, gift cards, and most importantly: prayers.  Please keep praying.

Love,

The Lantz Family
#carolinestrong
#ftgf

Prepping for her CT-guided pelvic biopsy.

Another Relapse

Caroline had follow-up scans on Monday and unfortunately she relapsed with Neuroblastoma once again. This time, the main area of concern is her left pelvic bone (picture below).

This is now the 4th time she has had to fight this disease, and to say she’s heartbroken is an understatement. She was looking forward to starting her flag football season, finishing out the school year on a high note and going to 3 summer camps in June.  Instead, and after beating this disease three times already, she will have to focus on beating this dreadful disease AGAIN.

We have been working with our amazing care team at Vanderbilt, as well as consulted with our friends at BeatCC to determine the best treatment plan this time...

The tentative plan starting next week at Vanderbilt:

• Bone marrow biopsy to see if it’s spread into her marrow 
• Biopsy at pelvic disease site for genetic testing / sequencing 
• Review and finalize a treatment plan with the care team (most likely will be a newer Phase 2 Clinical Trial that is open at Vandy through BeatCC; more details to come on this) 

Assuming all goes as planned next week, Caroline will start treatment mid-April.

Obviously a tough time for all over here, but our focus right now is 100% on gearing up to fight again, and taking care of our whole family, especially big brother Andrew, who is finishing up his senior year.

How can you help?

• Pray, pray, pray some more.  We literally need ANOTHER miracle.
• Love on your kids and family every day. 
• UberEats Gift Cards.  Although we love the meal train, our schedule is/will be unpredictable, so this option is more flexible for us...you can send to: margaretlantz@gmail.com
• Donate Blood 
• Donate to the Beat Childhood Cancer Foundation in Caroline's name and help us find a cure!!!

Thank you (again and in advance!) for the prayers and support - this is just devastating.

With love,

The Lantz Family
#carolinestrong4.0
#ftgf

New tumor site.

Scan Results: 2.6.2026

Caroline's scans today were inconclusive. 

CT Scan: no visible evidence of disease 

 
PET scan: one very tiny new spot in her abdomen. This spot was NOT definitively flagged as relapsed Neuroblastoma at this time. It’s very small (approximately 4mm) and had mild/moderate FDG uptake, which means there’s a chance it could be a false positive (infection, inflammation, etc.).

After talking to her team at Vanderbilt, the plan is to re-scan Caroline in 7 weeks to see if the spot is still lighting up, has it grown, is it gone etc., and then go from there.  

So for now, unfortunately, we just wait and hold onto hope. Unless anything changes in the meantime, we’ll update the blog after the next set of scans.

Thank you for your continued love, support and most importantly…prayers!

The Lantz Family
#carolinestrong
#ftgf