Caroline was diagnosed with Stage 4 Neuroblastoma: a high-risk, aggressive cancer that spread throughout almost all of her body, including her bone marrow. She currently has no evidence of disease, and is on a clinical trial to attempt to reduce her chances for relapse. She receives treatment at Vanderbilt Children's Hospital in Nashville, TN; this blog documents her journey.
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!
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!
Our family had the honor and privilege of spending a very rewarding day with the BeatNb.org 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: beatnb.org/dfmopaper.
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.
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 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.
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!
The Lantz Family
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.
We had a great weekend celebrating Caroline, who turned 6 years old today! She was able to hangout with her grandparents and aunt, celebrate with some school friends at the Lifetime gym, eat sushi for the first time in a year, and enjoy cheesecake and lots of whipped cream! She also got to FaceTime with Maryland family members, and had a bunch of surprise visitors drop by with birthday wishes and treats - we are grateful for each and every one! Such a happy day!
Caroline had 2 visits to Vanderbilt in the last 3 days. On Friday, she had a scheduled monthly clinical visit, and today, she visited as an Ambassador of the hospital to help open the brand new 10th Floor!
Clinical Update - All of her blood tests and urine makers (can aid in early detection of a relapse) looked great, and the doctors are happy with her current level of health. She will return to Vanderbilt in July for her 3-month post-treatment MIBG and CT scans, as well as a full day of labs and clinical testing.
Giving Back - She always has a fun time representing Vanderbilt in any way she can! Caroline was able to tell her story, and tour the new floor, which will take care of young patients just like her for many years to come. The video she worked on today should be published in the fall and we will certainly share when available. We are very grateful to the Carell family for being so generous and supportive of Monroe Carell Jr. Children's Hospital at Vanderbilt, as well as all of the other donors that made the expansion possible. It's a true blessing to have access to the kind of care that saves lives so close to home!
We just returned from Caroline’s Make-A-Wish trip to the Cayman Islands! She originally picked a trip to the Macy’s Thanksgiving Day parade, but because of the timing of her treatment last November, she picked an alternate...riding ponies on the beach...and much, much more!
The Cayman Islands were gorgeous, and we’re so thankful Caroline is healthy enough to travel and truly enjoy the water, as well as everything the Island had to offer. We will let the pictures do the talking, but two very special shout-outs to those that made this all happen:
~Franklin Girls Cotillion: they raised the funds to sponsor the trip! What an amazing organization led by very kind and generous young ladies; we hope Caroline grows up with the same servant heart.
~Make-A-Wish of Middle Tennessee: They really do make wishes come true! Everything went off without a hitch!
Thankful for so many things, but especially time together relaxing as a family!
Living her best life!
One the way to the Grand Cayman Islands - so excited!
Snorkeling in the crystal clear water
Cayman Turtle Center
Girls' Pool Day
Horseback riding along the ocean
The kids discovered (virgin) Pina Coladas while we were there...
Oceanfront dinner on the last night
Jet-skiing with Daddy
Stand-Up Paddle Boards
Thank you Make-A-Wish and the Franklin Girls' Cotillion for an amazing vacation!