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's platelet levels were too low to be admitted today for chemo - round 5. We will try again next Thursday, when her body has had time to naturally get her levels up.
While we were at her blood draw/admission appointment, we met with Caroline's oncology team regarding clarity on the original and most recent CT Scan results, side-by-side. They main tumor shrunk significantly, and is no longer encasing her aorta. The doctors confirmed that this is adequate progress for this stage in her protocol. We will be meeting with Caroline's surgeon on Thursday to determine if her tumor is operable at this point...and if so, when.
We also discussed their concerns from the CT Scan about the compression fractures in her back, which are still present, and have worsened slightly. They will be meeting with the Chief of Pediatric Neurosurgery on Monday, to determine next steps for stabilizing her spine throughout the remainder of her (long) treatment, if necessary. In the meantime, we will do our best to keep this little monkey from getting too wild with her fractured back!
Thank you for your continued thoughts and prayers - especially these past few days, during the uncertainty of the CT Scan results.
Caroline's CT scan wasn't as definitive as her doctors would have liked, so we are still awaiting clarity on the results. They are scheduling her for an MIBG scan, after chemo round 5, but hopefully while we are inpatient next week. The CT Scan showed progress in some areas, but some potential concerns in others, so they want to do the MIBG scan to get more accurate results, and then decide how to move forward with treatment.
Please send continued prayers for Chemo - Round 5, which starts tomorrow (and includes a steroid!), as well as positive results from the MIBG scan. We will send out a further update when we have it.
After 4 unexpected nights in the hospital, we are home! Caroline got another blood transfusion this morning, and is coming home with an IV antibiotic that Nurse Mom will be administering. She also got her CT Scan this afternoon, but we do not know when we will have the final results...we will keep everyone posted.
Our photos from the "Flashes of Hope" session arrived while we were gone - you can read the blog post on when they were taken, and about that amazing organization, here.
There is a T-Shirt fundraiser open through March 11th, if you weren't able to get t-shirts the first time they were being sold, or need more. Click here for the link. Thanks for all your support!
Caroline was admitted to the hospital on Thursday (2/15) for a fever, which turned out to be a symptom of a bacterial strep infection. Her fever is down, the bacteria strain has been diagnosed, and is under control (so far) with IV antibiotics. She is still in the hospital waiting for her counts to be high enough for discharge...we're thinking that might be Monday or Tuesday. Caroline will have to go home with a once-a-day IV antibiotic. She will still get her progress CT Scan on Monday (2/19), although we do not know when we will get the results of the scan. We're hoping she's still able to be admitted on Friday (2/23) for Chemo - Round 5.
THANK YOU to everyone who has reached out with prayers, texts, emails, voice messages, cards, meals, gifts, care packages, handwritten notes and fundraising efforts. We are more grateful than we will ever be able to adequately express, and we appreciate EVERY ONE OF YOU! We are absolutely blown away by the huge army of support behind Caroline and our family.
We still have a lot of friends and family reaching out to ask how they can help (thank you!), so rather than reply individually, we wanted to put everything in one convenient place, and include direct links. Here are some of the ways you can help us currently should you feel moved to do so:
Caroline has received so many amazing toys and crafts over the past few months! Margaret has put her OCD skills to work and organized all of those goodies by category, and sorted them into bins that we can easily take back and forth to treatment; they really do help Caroline pass the time in clinic and in the hospital. We are in great shape with those items for the foreseeable future - thank you!
It's also been very special to watch Andrew feel included; he definitely feels all the love!
Admission day - getting antibiotics, blood and platelets.
Uncle Peter came from Baltimore to visit!
With thankful hearts,
Mark, Margaret, Andrew & Caroline
We had a sweet, fun day: candy before school, beautiful matching necklaces from Mark for Caroline and Margaret, a cross necklace for Andrew, in-home dance lessons for Caroline, visits with hospital friends and many awesome care packages!!!
We also had a follow-up appointment today with Caroline's neurosurgeon, who is monitoring her vertebral compression fracture. As a refresher, the compression fracture occurred around December 8th. They believe (and we still hope!) that the reason for the compression fracture is because the cancer cells around her spine were reacting to the chemo, and shrinking, compressing her spine. Caroline is still at risk of further compression fractures throughout her treatment protocol, which is still a substantial length of time, so they will continue to do intermittent x-rays, as well as review all of her scans ordered by the oncology team.
Prior to our neurosurgery appointment, we were able to visit sweet Molly, who is having an unexpected stay at the hospital due to mucositis and fever. Caroline was able to get her to smile, but she and her family could really use some extra prayers. Neuroblastoma treatment protocol has patients/families overnight in the hospital plenty, so any extra nights just feel extra hard! Caroline also got to visit and hug on a couple of her favorite caretakers from Vanderbilt.
Besides going to school and missing her friends, one of the biggest things Caroline misses is her dance/tumble classes. One of her teachers came to the house this morning to help her learn a dance routine to Carrie Underwood's "Champion." The dance is so adorable! Caroline was so happy to be dancing, and we're so grateful that she is still able to do something she loves, even if it's isolated.
We will be going back to the hospital on Friday for our regular clinic visit, and then her CT scan is scheduled for Monday, 2/19.
We hope that everyone is having a great week (despite the weather, if you're in TN!), and thank you, as always, for the prayers and support.
Love to all,
The Lantz Family
Visiting Molly and SO excited to see Nurse Katie and Dr. Kaviany
Caroline was discharged late night on Wednesday, and has been home resting for the last 2 days; it always feels great to come home from the hospital. Her biggest complaint post-chemo is "feeling yucky and nauseous," so she does a lot of laying around with her trusty companion, Hank the Tank. To pass the time, she's been working on Valentine's Day Cards and painting. Knowing the forecast for the weekend, we took advantage of the nice weather and brought Caroline to the neighborhood park to swing for a few minutes.
Vanderbilt Home Health came to give her Neulasta shot today, so her counts should be on the upswing within a week. Our next scheduled clinic visit is 2/16, then a progress CT Scan on 2/19.
Andrew is still a little sick, and still quarantined far away from Caroline...poor guy is lonely!
TGIF! We hope that everyone is staying healthy, warm and happy this weekend!
Caroline is in the hospital for Round 4 of chemo. So far, so good. Luckily, she doesn't need a steroid this round, so that's a relief! This is a shorter round...she only has 3 nights of chemo...but 3 VERY long nights. The medicine is spread over about 7 hours, and it starts at 11pm. We're running on fumes, but she definitely had a fun-filled day today, despite hardly any sleep in 24 hours.
We had some visitors, her room got a Valentine's Day makeover, she got her picture taken by "Flashes of Hope," met Lana Del Rey in Seacrest Studios, and got a rainbow unicorn balloon from Molly's brother! All-in-all, a good day, considering.
Andrew is sick, and has been home from school since last Friday, so he isn't able to visit Caroline during this stay, but they still talk over FaceTime. Nona and Papa (Margaret's parents) are in town, so that's always helpful.
We anticipate going home either late tomorrow night, or Thursday. The next big step is the CT scan which is scheduled for 2/19. We're hoping the scan shows significant progress, which would allow the surgical team to then remove what is left of the main tumor (in her mid-section).
Thank you, everyone, for all the support for Caroline and the rest of our family.
Meeting Lana Del Rey
Hanging with MP!
Rainbow Unicorn Balloon from Jamison and FaceTime with cousins!