Sunday, November 24, 2019

TWO YEARS since diagnosis - where are we now?

It’s hard to believe we’ve hit the two year “cancer-versary” of Caroline’s diagnosis: November 24, 2017. We feel so many things, but mostly just grateful. Her original diagnosis was on Black Friday, and last year we were inpatient for Thanksgiving AND her one year mark...we are continuously reminded of how much we have to be thankful for, regardless of the holiday, or what the future holds.

The biggest blessing is that Caroline is alive and still has NO evidence of disease! She is on a clinical trial drug to (hopefully!) prevent relapse, and so far, so GREAT! She takes 6 pills a day, but relative to what she’s been through, it’s nothing. She is thriving in Kindergarten, was able to play soccer this Fall, and is enjoying being a Daisy Scout. She loves hanging out with her friends and having the freedom to do things that involve germs! She still loves singing, dancing, talking to everyone she meets, all things American Girl Dolls, and of course, her BFF dog, Hank.

Andrew has had his own version of challenges during this process, but he is resilient, strong, and protective of his little sister. He seems to have bounced back and is in full-on tween mode (fun times). He's loving all the new-found freedom Middle School has to offer, and is still football’s #1 fan!

As for Mark and Margaret...we’ve been trying to find or new “normal” over the past 6 months. Margaret went back to work full-time in September, and Mark has been steadfast in keeping our family together and supported; he's been our rock. PTSD is real, and it’s something that weaves in and out of our house regularly. We process and cope differently, but try to take each day, hour, minute as it comes, and practice patience.

As a family, we’ve slowly been able to show up for the community that carried us through, and it feels so good to be able to pay it forward and care for others. We’ve also been able to champion some causes that we so strongly believe in:, Make-A-Wish, Children’s Miracle Network, and of course, the Monroe Carrel Jr. Children’s Hospital at Vanderbilt!

We will continue to use the blog to update as Caroline gets required scans throughout the rest of her clinical trail (approximately 18 more months). Thank you for pouring your love, support and prayers into our family…you have sustained us through the past 2 years.

Looking forward to the new year and new decade!

All the best to you and yours,
The Lantz Family

Friday, October 4, 2019

6-Month Scan Results

Caroline just completed 3 days of testing, which concluded today with a CT Scan and an MIBG Scan.  The results show that she still has NO EVIDENCE OF DISEASE at the 6-month mark.  She will continue to take her 6 daily pills of the DFMO clinical trail, and then return for a 3-month check-up towards the end of the year.

Thank you for your steadfast support and prayers through this long, long journey!

The Lantz Family

A special video message from Caroline!

Thursday, September 12, 2019

Giving Back - Help Caroline's Team WIN!!!

Hello friends and family!

Caroline is back in school, playing YMCA soccer, starting Daisy Scouts, faithfully cheering on her brother (who is playing multiple sports!), and overall doing well.  Her next round of progress scans are scheduled for early October; we will update the blog with results.

With standard treatment behind us, our family has spent a lot of our free time giving back to the pediatric oncology community, and especially at Vanderbilt.  Most recently, Caroline was asked to participate in the Rascal Flatts Celebrity Golf Classic!  Please join us in donating to Team Caroline & Levi for Vanderbilt’s fundraising drive.  Let’s beat the other team and win this one!

Thank you for supporting our family, and pediatric cancer research/awareness!

The Lantz Family

Thursday, August 8, 2019

BeatNb, Dr. Sholler & DFMO Lab Visit

Our family had the honor and privilege of spending a very rewarding day with the team yesterday at their main research laboratory in Grand Rapids, Michigan.  To put it in context, the BeatNb organization is the national leader in the research and trials behind the DFMO drug that Caroline takes daily to hopefully prevent her cancer from relapsing.  DFMO attacks the root of the Neuroblastoma cells, so they don't ever have a chance the turn into harmful and deadly cancer cells.  DFMO has shown significant improvement in survival rates of patients that are on the trial and have no evidence of active disease as noted in this link:

Lead researcher for the DFMO trial, Dr. Giselle Sholler, and her team members, took us on a behind-the-scenes tour of the DFMO Lab, as well as The Helen DeVos Children's Hospital Oncology outpatient and inpatient clinics. We were joined by the entire BeatNb team (Pat, Kyle, Robyn, Charlie, AJ, Savannah and Yvette), as well as fellow advocates and partners (the creators of "Love Your Melon" were there!).  All convening from various parts of the country, we remained together all day and ended with great testimonials and conversations over dinner!  Seeing the research lab first-hand, and witnessing how the teams are diligently testing cancer treatments...trying to find a CURE for these amazing kids that are battling this horrible disease, was an educational and truly moving experience. 

A heartfelt thank you to our amazing friends Katie R., Ellen P., and Steve R., for each pointing us in Dr. Sholler's direction, back in November 2017, at the start of this journey.  Our goal from Caroline's  initial diagnosis week was to get to clear scans and successfully enroll in the DFMO clinical trial at the end of standard treatment.  She did it!  We met that goal, and we will do everything we can to advocate and support others who can benefit from this promising drug.

Feeling Blessed!

The Lantz Family
Caroline looking at active Neuroblastoma cells!

Thumbs up for trying to cure cancer!

Each vial contains the donated cells of individual Neuroblastoma patients.

Caroline and Dr. Sholler!

Monday, July 29, 2019


Caroline was discharged from Vanderbilt tonight and is already feeling MUCH better!  She will be on an oral antibiotic for 12 days, but other than that, she has no restrictions and can get back to enjoying the rest of her summer.

Thank you for all the prayers!

The Lantz Family

Sunday, July 28, 2019

Bacterial Infection / Hospital Admission

After complaining of a headache on Friday night, and waking up in rough shape Saturday morning (vomiting, chills, leg and stomach pain, high fever) we visited the Williamson Medical Center ER, which is only 2 miles from our home. They quickly ran nose/throat swabs and urine/blood tests, but nothing showed up on those initial results, so we were sent home on an antibiotic as a precautionary measure.

Overnight in the hospital lab, a bacteria rapidly grew in the blood culture they took at Williamson, so they called us Sunday morning to report that occurrence, and asked us to go to the Vanderbilt ER ASAP.

After a visit with the doctors, and some more testing, Caroline was admitted to Vanderbilt Floor 6A today for an infection in her bloodstream. We aren't sure how or when she contracted it, but it can be very dangerous for someone with a (still) suppressed immune system.

She has already started a different IV antibiotic that she will receive twice a day while inpatient, and then hopefully move to oral antibiotics later this week. Caroline is already feeling and looking better than she did yesterday, so we are glad both Williamson and Vanderbilt were aggressive and persistent with their testing, follow-up and diagnosis.

We will update the blog as she progresses but we are hoping this is a short 2 day stay.

We appreciate all of the prayers and support! Things can always be worse, so we try and put all of these setbacks in perspective even though it’s frustrating and inconvenient to a “normal” life that we want for her, and the family plans we had for the weekend!

Always Fighting,
The Lantz Family

Friday, July 19, 2019

Results: 3 Month Progress Scans Today

Caroline had her 3 month post-treatment progress CT and MIBG scans today at Vanderbilt, and we can happily report that she still has No Evidence of Disease!  Both scans showed no signs of any tumors, so we will continue on the current path of daily doses of DFMO (clinical trial drug), to hopefully keep the cancer away!

Caroline will have monthly blood and urine work at Vandy, and then is due back for another round of progress scans in October.

Thank you for all the support!

The Lantz Family