Caroline had her 1-year scans this week, and the CT Scan, MIBG Scan and lab markers all show NO EVIDENCE OF DISEASE!!! To say we are beyond thankful is an understatement! She will continue to take her DFMO clinical trial drug (to hopefully prevent relapse) for the next 13 months, and will be re-scanned in 6 months. With the flu season and COVID-19, we're hoping she can remain healthy through the season.
We're so grateful to her medical team that helped get us here, and who continue to work hard every day for these families! Also a huge shout to all the folks at BeatNb who are fighting so hard for these kids to be able to get access to DFMO, which shows amazing promise in battling this awful disease.
Be safe out there!
The Lantz Family
November 2017: diagnosed with Stage IV, High-Risk Neuroblastoma; Nov 2017-April 2019: completed standard treatment protocol / no evidence of disease; April 2019-April 2021: enrolled in/completed DFMO clinical trial; April 2022: RELAPSE; April 2022-June 2023: completed relapse treatment protocol / no evidence of disease (again); June 2023-June 2024: enrolled in “compassionate use” high-dose DFMO clinical trial; June 2024: RELAPSE #2
Friday, March 13, 2020
Sunday, February 23, 2020
Hockey Fights Cancer Night
It's been a while since we've updated the blog - life has been "normal," and we have a true appreciation for the routine and monotony of regular life - but we wanted to share something awesome that we were able to be a part of last night!
Caroline was asked to represent Monroe Carell Jr. Children's Hospital at Vanderbilt for the Nashville Predators' "Hockey Fights Cancer Night." She was actually asked to participate last year, but was too sick, and in the hospital. However, last night she was feeling great and able to help bring awareness to pediatric cancer, along with other oncology friends (some survivors and some in active treatment). They all got to particiapte in a wide variety of pre-game activities.
Caroline was gifted a personalized jersey with her last name and the year she was diagnosed, had her picture taken with Flashes of Hope photography, and was then led down to the locker room. She was selected to be the hype girl and open the doors to greet the Predators players as they headed out to the ice (video below). Graciously, they also included Andrew in that part of the festivities; he said it was one of the best nights of his life! After fist-bumping all of the players, Caroline got to watch the team warm-up against the glass, and then accompany team captain, Roman Josi, on the ice for the National Anthem!!!
All of the kids and their families were treated to box suites, where they cheered on the Predators in a nail-biting game: the Predators won the game in sudden-death overtime, with 8 rounds of a shoot-out! It could not have been a better ending to a wonderful night for our family, but most importantly, the Predators fans donated over $51,000 for Cancer research at Vanderbilt, from collections made during the game!
We want to thank the groups and friends that made the night so perfect for us all: The Nashville Predators, The Nashville Predators Foundation, The 365 Pediatric Cancer Fund, Pekka Rinne, Monroe Carell Jr. Children's Hospital at Vanderbilt's staff and medical team members, Tracy and Buddy from Angel Heart Farms, Flashes of Hope, the Larsen Family, and Caroline's grandparents for coming out to support us!
Overall, Caroline is doing really well these days, She is still loving Kindergarten and American Girl Dolls. Her one-year progress scans will be some time in April, and we will certainly update the blog with results. Thank you for the continued prayers for clear scans!
Amazing!
Caroline was asked to represent Monroe Carell Jr. Children's Hospital at Vanderbilt for the Nashville Predators' "Hockey Fights Cancer Night." She was actually asked to participate last year, but was too sick, and in the hospital. However, last night she was feeling great and able to help bring awareness to pediatric cancer, along with other oncology friends (some survivors and some in active treatment). They all got to particiapte in a wide variety of pre-game activities.
Caroline was gifted a personalized jersey with her last name and the year she was diagnosed, had her picture taken with Flashes of Hope photography, and was then led down to the locker room. She was selected to be the hype girl and open the doors to greet the Predators players as they headed out to the ice (video below). Graciously, they also included Andrew in that part of the festivities; he said it was one of the best nights of his life! After fist-bumping all of the players, Caroline got to watch the team warm-up against the glass, and then accompany team captain, Roman Josi, on the ice for the National Anthem!!!
All of the kids and their families were treated to box suites, where they cheered on the Predators in a nail-biting game: the Predators won the game in sudden-death overtime, with 8 rounds of a shoot-out! It could not have been a better ending to a wonderful night for our family, but most importantly, the Predators fans donated over $51,000 for Cancer research at Vanderbilt, from collections made during the game!
We want to thank the groups and friends that made the night so perfect for us all: The Nashville Predators, The Nashville Predators Foundation, The 365 Pediatric Cancer Fund, Pekka Rinne, Monroe Carell Jr. Children's Hospital at Vanderbilt's staff and medical team members, Tracy and Buddy from Angel Heart Farms, Flashes of Hope, the Larsen Family, and Caroline's grandparents for coming out to support us!
Overall, Caroline is doing really well these days, She is still loving Kindergarten and American Girl Dolls. Her one-year progress scans will be some time in April, and we will certainly update the blog with results. Thank you for the continued prayers for clear scans!
Super Fan
Buddy from Angel Heart Farms
Twins
Family
Gnash
Pekka Rinne
So close!
She made the big screen - in the middle with Roman Josi!
We love Vandy!
Champ!
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: BeatNB.org, 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
#carolinestrong
#ftgf
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: BeatNB.org, 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
#carolinestrong
#ftgf
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
#carolinestrong
Thank you for your steadfast support and prayers through this long, long journey!
The Lantz Family
#carolinestrong
#ftgf
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!
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
#carolinestrong
#ftgf
#carolinestrong
#ftgf
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 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.
Feeling Blessed!
The Lantz Family
#carolinestrong
#ftgf
#wewillbeatnb
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
#carolinestrong
#ftgf
#wewillbeatnb
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
HOME!
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
#carolinestrong
#ftgf
Thank you for all the prayers!
The Lantz Family
#carolinestrong
#ftgf
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
#carolinestrong
#ftgf
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
#carolinestrong
#ftgf
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
#carolinestrong
#ftgf
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
#carolinestrong
#ftgf
Monday, July 8, 2019
Caroline Turns Six!
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!
Love,
The Lantz Family
#carolinestrong
Love,
The Lantz Family
#carolinestrong
#ftgf
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