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.