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"