In 2017, Caroline was diagnosed with Stage IV, High-Risk Neuroblastoma: an aggressive, solid-tumor cancer that spread throughout almost all of her body, including her bone marrow. She completed a 2-year clinical trial (called DFMO) in April 2021, and relapsed in April 2022. She is currently a patient at the Monroe Carell Jr. Children's Hospital at Vanderbilt in Nashville, TN; this blog documents her journey.
Caroline completed Cycle 2 of her chemo-antibody therapy, and was discharged on Saturday. She’s home resting and recovering from the harsh side effects of treatment. Unless she needs to sooner, her next clinic appointment is on Friday (5/27). She has progress scans and a bone marrow biopsy on 6/1 and 6/2. We will update the blog after we get the results from her scans. Thank you so much for your prayers and support.
The Lantz Family #ftgf #carolinestrong
How she spent most of the time inpatient.
Heading home...too weak to walk.
Rashes from the antibody leaving her system.
One shot per day for 7 days post-inpatient treatment.
Caroline started Cycle 2 today - two chemotherapies (Irinotecan and Temozolimade) each day for five days. The antibody therapy (Dinutuximab) will be added tomorrow - it runs for 20 hours per day through Saturday. The antibody causes extreme pain, so starting tomorrow until we leave, she will be on a constant dilaudid drip 24/7.
Assuming all goes well, Caroline should be discharged this weekend. The other main side effects from this treatment are: rash, nausea, diarrhea and fever.
Please pray for an uneventful week, and that this treatment is working to kill off all of the Neuroblastoma cells in her body. She will get her progress scans on June 3rd.
It's been a busy 2.5 weeks at home for Caroline! The first few days of side effects from the treatment were ROUGH and hit Caroline really hard. She ended up getting an NG tube to assist with taking medication. She also started to lose a lot of hair over the past few days, and asked us to shave her head. So many changes!
Caroline has been able to go to school most of last week, and all this week. After school, she has been going fishing with her brother and really loves it. Cycle 2 is scheduled to begin Monday (5/16)...we will post an update from the hospital.
Thank you for the constant outpouring of love, support and prayers; we are so grateful you all are helping us walk through this again.
Caroline finished her inpatient stay for Cycle 1 of treatment for relapsed Neuroblastoma today! She's at home resting and recovering from a brutal 6-night stay at Vanderbilt. The side effects have been nausea, diarrhea, occasional rash, fever, loss of appetite, overall pain, and discomfort.
In the past week, she's had her port placed, a bone marrow biopsy, 2 chemos each day for five days, and the antibody treatment infused over 20 hours per day for four days. Beginning today, for the next 7 days, Caroline will receive Leukine shots to help her immune system recover. She is also on more than a half dozen other medications to help with the treatment side effects and infection prevention. Cycle 2 will start in about two weeks (mid-May), with weekly outpatient clinic visits to check her counts in between.
She will spend the next few days recovering at home, and we are hoping she feels well enough to get back to school soon, although she'll have to limit her physical activity due to the port (located in the upper right side of her chest), and she also had to stop playing spring rec soccer.
Please continue to pray / send good vibes / hope for the best possible outcome for Caroline. In addition to needing the treatment to kill off these aggressive cancer cells spread throughout her little body again, she is really just so sad. This time around she is more aware of what she's "missing," and she has a lot more "big" feelings about what's going on. Although we have faith and will go to the ends of the earth to fight this, we all know too much and are scared.
We are so grateful for her amazing care team at Vanderbilt…as always, they have been gracious, patient, and compassionate during this entire process.
As we mentioned before, we have received some packages in the mail without sender information…please know we appreciate every one of you, and the outpouring of love and generosity! We know we can’t do this alone, and there is much comfort for us in numbers. We definitely can feel all the love and support, and know Caroline has an army from all over behind her!
Caroline got a VERY special visit from Squid, the hospial's emotonal support dog. He spent almost an hour laying in bed with her on one of the hardest days of the cycle. As soon as she saw Squid coming into the room, her face lit up - and words cannot describe how much seeing her smile meant! Thank you Mars Petcare and the Better Cities for Pets Program for sponsoring Squid at VUMC!
Caroline's bone marrow biopsy came back showing evidence of disease. We are deflated, but not defeated. It's such a helpless feeling to watch your “visually” healthy and happy child have such an aggressive cancer taking over their body. Again.
Today is Day 2 of Cycle 1: 2 chemos and an antibody therapy. The chemo side effects hit her hard yesterday, but luckily, she was able to get medication to counteract it...although it made her feel out of sorts and yucky all day. Day 2 of Chemo started this morning at 6:30am, and it’s mind-blowing to think that she’s already received eleven medications in less than 4 hours…with lots more to come. The antibody therapy is extremely painful - it runs over 20 hours and is combined with a constant drip of Dilaudid, a few “pre-meds" (Tylenol, Benedryl, Zofran, Pepcid, Gabapentin and an antibiotic) to prep her body for the drug, as well as various other medications over the 20 hours to address side effects. She’ll basically be connected to IV medications from now until we leave.
Shout out to Caroline’s new friend, Zack, who she met at the Preds game 2 weeks ago. She taught him about hockey, and in return he offered to help design and launch a t-shirt campaign through his merchandise company. We really appreciate all the love and support from his team. If you would like to get a #carolinestrong t-shirt, they are now available by clicking here.
We’ve also listed other ways you can support below; we’re beyond grateful.
Tomorrow is a big day...Caroline will go under anesthesia to have her central line (port) placed, get a bone marrow biopsy from her lower back, and then she will be admitted to the Oncology floor at Vanderbilt Children's Hospital to begin her first cycle of chemotherapy.
A recap of the cycles: 2 chemo drugs + 1 antibody drug while inpatient over 5 nights/6 days, home to recover for two weeks – including daily shots to recover her immune system, then repeat again.
Please pray that her body responds to this therapy, and that it immediately starts to kill off the cancer cells in her body!
Many thanks for all the prayers, outreach, love, and support...it's go time!
The Lantz Family #carolinestrong
***T-Shirts are almost ready…we will post the link as soon as we have it. If you’d like to help in the meantime, here are a couple links:
After an overwhelming week full of appointments, consultative phone calls and exhaustive research amongst multiple hospitals, we feel confident that Caroline’s medical team has put together the best way to attack her relapse. Her Thursday PET scan detected additional spots of new disease, so we’ve all decided that the best course of action is to immediately start Caroline on two cycles of treatment for relapsed Neuroblastoma and then go from there.
Here is what we know the coming weeks will look like:
April 19th: Echocardiogram, lab work and an appointment with Caroline’s oncology team
April 21st: Central line (port) placed in her chest for chemotherapy, antibody treatment, labs, etc., as well as a bone marrow biopsy to see if the disease has progressed to her marrow.
April (date TBD): Admission for inpatient stay at Vanderbilt to start her first round of treatment, which will consist of 2 different chemotherapies that she did not receive during the standard treatment protocol, plus an antibody therapy that she's received before.
Cycle 1 will be about 1 week in the hospital, followed by 2 weeks at home to recover. While at home, Caroline will get daily shots to help boost her immune system and recover from the treatment; we hope she will be able to go to school some of the time between cycles. Cycle 2 should start at the end of her 2 weeks at home. After 2 full cycles (about 6 weeks from start), Vanderbilt will re-image Caroline to determine if there is any improvement at the disease sites. If the treatment is working, additional chemotherapy cycles will continue...if not, her team will re-assess.
HUGE shoutout to our healthcare friends and family, near and far, who went WAY above and beyond for us in so many ways this past week - y’all know who you are and we truly could not be more grateful to you!
We will continue to post all updates on this blog, and appreciate the love and support as we walk through this extremely difficult and scary time. Again.
Thank you for the prayers, The Lantz Family
PS: For those that have asked, once we get this treatment underway, we should have some news about #carolinestrong t-shirts. If you’d like to help in the meantime, here are a couple links:
This is a tough thing to post: Caroline's MIBG scan from Thursday showed a tumor near a lymph node in her neck that indicates her Neuroblastoma has relapsed. We don’t know much more than this, and are working with Caroline’s oncology team to coordinate next steps, using ALL known resources and treatments available anywhere to get the best possible outcome for Caroline. We will fight, again.
We have multiple appointments scheduled for next week to get more clarity on the situation and won't have any updates until the end of next week. In the meantime, we are both home with the kids and plan on having a "normal," fun weekend with our usual activities. We are completely shocked, devastated and overwhelmed with our own questions for the medical team. Once we have more information, we will post on this blog ASAP. Until we know more, please keep our amazingly strong daughter in your prayers and please spread the word...the more prayers the better.
Thank you in advance to the entire care team at Vanderbilt and Beat Childhood Cancer for how much we are about to lean on them for answers/options.
Friends/Family/Co-workers/Community: Thanks in advance for your patience with replies to any texts or emails...we have a lot to process in the coming days. We greatly appreciate all your compassion, help, love and support…we are going to need it!
Mark and Margaret
PS - we've already had quite a few requests on how people can help in the meantime: