Treatment Next Steps

We were at Vanderbilt today for consultation and simulation with Caroline's Radiation Oncologist and his team. Fortunately, it looks like the tumor is clearly accessible for radiation with minimal risk of damaging any organs or other body parts.  In the picture below, Caroline is showing off one of the 3 marks she has on her abdomen/torso that will be used as identifiers for her upcoming treatment.  

The plan is for her to receive 5 SBRT photon radiation treatments (higher dose, ultra-concentrated radiation) starting late next week followed by progress scans in late July.  The side effects should be limited to nausea and fatigue, and hopefully not cut into her summer too much.  

Thank you for the support and prayers!

The Lantz Family

#carolinestrong 

#ftgf

A Weekend of Distraction

We will finalize Caroline's "next steps" for treatment this Thursday (5/15) and update the blog as soon as we're able.

In the meantime, we had an incredible weekend of distractions!

Caroline had the honor of being the Official Child Ambassador of the for the 84th Running of the Iroquois Steeplechase, which benefits the Monroe Carell Jr. Children's Hospital.  Thank you to everyone that made our day so special - we had a truly amazing time making memories we'll never forget!  

News Channel 5 Steeplechase Segment featuring Caroline - CLICK HERE to watch

Watching the Race from the Bell Tower!

Ringing the bell to start the race!

Mother's Day at Arrington

Scan Results

Caroline had a CT and PET scan at Vandy today to check progress post radiation treatments.

RESULTS:

- The spot they radiated in March by her neck is no longer visible on imaging.

- A spot in her abdomen that was present in Sept 2024, but not visible in January 2025, is now back and measuring at 5mm.

The next step is for us to (again) review any/all options with her medical team to decide the path forward.  This is obviously not the news we all wanted, but she wants to fight and we will power forward once again. 

As soon as we have an update/definitive plans, we will update the blog.  

Thank you so much for your continued love, support and most importantly prayers for Caroline and our family.

The Lantz Family
#carolinestrong
#ftgf

5mm "new/old" spot now visible - highlighted in yellow right up against her aorta.

Ringing the Bell!

Caroline was able to "ring the bell" today, signifying the radiation portion of her treatment is complete!  She will have a 6-week break to allow the radiation to "do its magic," then get progress scans in May to measure her cancer/next steps.  

Thank you SO much to the entire Vanderbilt-Ingram Cancer Center Radiation Oncology team...they were amazing from the time we walked in the door, until we left!

So grateful,

The Lantz Family

#carolinestrong

#ftgf

Radiation Treatment

Caroline had her first photon radiation treatment today at the Vanderbilt-Ingram Cancer Center. There was some anxiety leading up to the appointment, but she did great! She will get radiation every week day until the end of March.  We'll post an update when she's completed all of her radiation treatments (unless something unexpected happens).

Thank you for your continued support for our family - we really appreciate the words of encouragement, gift cards and prayers.

Love,

The Lantz Family

The "wish" tree in Radiation Oncology lobby.

Radiation Treatment Planning

Caroline had her radiation oncology simulation at Vanderbilt today.  The team measured/marked her treatment area and fitted her for a custom mesh stabilizer brace that will hold her still during the radiation treatment.  She will begin the 20 cycles on Wednesday, February 26th, going every weekday until completion.  Potential short-term side effects are: nausea, fatigue and redness/tenderness near the radiated skin.

We are VERY proud of Caroline's bravery (always, but especially today)...she did a great job calming herself down using a mediation technique her Aunt Joanna taught her to power through the scary prep process.  She is wise and mature beyond her years; we are very fortunate!

Thank you so much for the continue kind words, prayers, and support...much appreciated!

Love,
The Lantz Family
#carolinestrong
#ftgf

Scan Results

Caroline's scan results showed good news overall.  One of her cancerous spots is no longer visible on imaging, and the other one measured smaller than it did in November.  She has one pesky spot between her left carotid and left subclavian arteries that has appeared throughout her cancer journey dating back to 2017.  We discussed a preliminary plan with her team to proceed with localized radiation as Caroline's next treatment step.  We will know more details in the coming days, but for now, indications are that it most likely will be ~17-20 treatments over a 4 week period, and then re-scan to see if anything still appears on imaging.

WE CAN'T EXPRESS HOW GRATEFUL WE ARE TO THE VANDY MEDICAL TEAM! They are very thorough, but also prompt and compassionate in their care!

We will update the blog as soon as we get treatment details.

Please keep the prayers coming!

THANK YOU,
The Lantz Family
#carolinestrong 

#fgtf

Unexpected Hospital Admission

Last week was a really rough week for Caroline at home. She was presenting with various "not well" symptoms all week, especially exhaustion. By Saturday morning, she spiked a fever that led us to an ER visit at Vanderbilt. After getting lab work and nasal swabs done, the provider admitted her to try and figure out what was going on. She got IV fluids, IV antibiotics, a blood transfusion and a platelet transfusion between Saturday and Monday. The viral panel tests and bacterial cultures all came back negative, so we still aren't sure what "infected" her body, but fortunately she is now feeling better and recovering at home and sleeping in her own bed.

Hopefully she can stay healthy until her scheduled progress scans next week (on Tuesday, 1/28). Please pray for great results; we'll post the scan results on the blog asap.

Thank you all for the outreach and support! Once again, we used your DoorDash and UberEats gifts cards all weekend so we didn't have to eat hospital food - MUCH APPRECIATED! 💜

Love,
The Lantz Family
#carolinestrong
#ftgf

Home and feeling much better!

Outpatient Cycle 4 - Complete

Caroline wrapped up Cycle 4 of her treatment today. Rash and itching were the primary side effects during the infusions, but she is safe at home although she's feeling really "yucky" and off.  She will get daily shots to help boost her immune system, which is currently registering at close to zero. Unless she encounters any issues or illnesses, her next scheduled appointment is for progress scans on 1/28 at Vanderbilt.

We're very appreciative of all the prayers, packages, meals and words of inspiration!

The Lantz Family
#carolinestrong
#ftgf

Cycle Delay for Snow

Clinic is closed today due to snow, so Caroline's last infusion for this cycle of treatment was moved to Monday.  Sending warm wishes to all our friends!

Cycle 4 Underway

Caroline started cycle 4 of her current treatment plan today: Immunotherapy + 2 Chemotherapies. Although nothing "unexpected" happened, it was still a really rough day for her...treatment had to be paused for very scary low blood pressure (57/30!). The team woke her, sat her up, got steroids in her, and gave her some IV fluids before being able to re-start treatment. She also broke out in a really bad rash all over her body, which makes it itch like crazy. It was a long, 7-hour day today in clinic, but thankfully she was able to complete the treatment and is now home resting up for tomorrow's chemotherapies.

As always, the Vandy staff did an amazing job making sure Caroline was safe today, and we can't say enough how appreciative we are for their care!

Thank you for all the prayers, meals, and overall support during this challenging time for our family!

Love,
The Lantz Family
#carolinestrong
#ftgf

Cycle 3 - Complete

Caroline completed her 3rd cycle of outpatient Immunotherapy + Chemo yesterday, and is now home resting.  Although she had a really rough and scary start to the week, it progressively got better for her, which was a huge relief.

This upcoming week she will do homeschool and rest up as her WBC, RBC and ANC (counts) will inevitably drop post-treatment.  Her next cycle of treatment is scheduled for January 6th, 2025.

We've loved seeing all the #carolinestrong ornaments on your Christmas tress; thank you so much for your continued support for our family. 

Merry Christmas,
The Lantz Family
#carolinestrong
#ftgf

Riding home after 5 long days at the hospital!

How the day started...

Cycle 3 - Immunotherapy + 2 Chemotherapies

Caroline started the 3rd round of her current treatment plan (Danyelza + Cytoxan + Topotecan).  She had a really challenging time today with the immunotherapy(Danyelza), especially her blood pressure dropping to a scary 49/23 at one point! The treatment needed to be paused twice until she was treated and stabilized.  Additionally, she required oxygen, steroids and other medications for rash and pain.  It was a really tough day, but, she's an even tougher kid!  She is now home resting and will go back in the morning for day 2 tomorrow. We are very grateful for the entire Vanderbilt medical team and their quick actions today!

If you'd like to get a #carolinestrong ornament delivered before Christmas, they're still available to order by clicking this link.

Thankful for all the prayers, meals, love and support!

The Lantz Family
#carolinestrong 

#ftgf

Scan Results on Black Friday (again!)

Caroline spent Black Friday at Vanderbilt today for her treatment progress scans (CT and PET), and lab work...she was originally diagnosed 7 years ago on Black Friday in 2017.

Both of today's scans indicated that the current treatment seems to be working; they are seeing a partial response (some shrinking) in both spots that were identified on the September 10th scan. Additionally, no new lesions were identified on either scan. She still has active disease, but it seems to be heading in the right direction.

She will get daily shots next week to boost her immune system so she can hopefully start Round 3 of this treatment plan (Danyelza immunotherapy + Cyclophosphamide chemo + Topotecan chemo) on Monday, Dec 9th.

While this is definitely news that allows us to breathe for a quick minute, please pray for a continued positive response (and ultimately a cure), as well as for Caroline's (and our family's) continued stamina to fight this awful disease.  

Love,
The Lantz Family
#carolinestong
#ftgf

Black Friday Scans

Black Friday 2017-2024

Cycle 2 Complete!

Caroline wrapped the second cycle of her new treatment combo of Danyelza + Cytoxan + Topotecan. She's tired and feels yucky overall, so she will rest up this weekend before starting homebound instruction again next week.

Her primary side effects this week were body rash, intense itching, and pain.

She's scheduled for lab work and a clinic visit next Friday (11/15), followed by progress scans on 11/29, which will determine next steps.

Thank you so much for the continuous prayers and support!

The Lantz Family
#carolinestrong
#ftgf

The rash moves all over her body and causes intense itching; it's excruciating to watch her endure.

When she's getting her treatment, she likes the room completely dark and quiet.

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...