This blog documents Caroline's cancer journey. November 2017: Diagnosed with Stage IV, High-Risk Neuroblastoma...April 2019: Completed treatment protocol and declared to have no evidence of disease; enrolled in DFMO Clinical Trial...April 2021: Completed DFMO clinical trial...April 2022: Neuroblastoma Relapsed...June 2023: Completed treatment protocol and declared to have no evidence of disease; enrolled in “compassionate use” high-dose DFMO clinical trial.
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!