Friday, October 16, 2020

Results: 18-Month Scans / Tests

Caroline had her 18-month labs, tests and scans over the past few weeks.  She got a hearing test, COVID test, blood work, Neuroblastoma urine marker tests, a CT scan, and an MIBG scan. Fortunately, the COVID test was negative, and her hearing is now back to normal levels in both ears (an improvement from her 15-month check-up).

All of her labs/blood work looked fine, and the urine marker tests used for early detection of a relapse showed no cause for alarm heading into the 2 big scans this week.

The MIBG scan showed no evidence of disease and was marked as a "Curie Score" of zero, which is the best possible score for that test. 

Caroline’s CT scan looked ok overall, except for one new “non-specific” 6mm spot in her liver.  The radiologist and her oncology team think it's most likely a non-cancerous Hemangioma, which is defined as:

“A liver hemangioma (he-man-jee-O-muh) is a noncancerous (benign) mass in the liver. A liver hemangioma is made up of a tangle of blood vessels. Other terms for a liver hemangioma are hepatic hemangioma and cavernous hemangioma. Most cases of liver hemangiomas are discovered during a test or procedure for some other condition. People who have a liver hemangioma rarely experience signs and symptoms and typically don't need treatment.)”

The plan to address this new development is to image the area again with another CT scan in 6 weeks, just to make sure it’s nothing more, or getting bigger, changing shape, etc.  We will update the blog again after that scan.  

Obviously we were hoping to get an "all clear" call, and not have to go back for any scans until April, so this is a little unnerving, and waiting another 6 weeks for the CT Scan causes anxiety, but we are thankful the MIBG and other tests looked OK.  This journey has definitely kept us humble and continues to remind us to live for today.

On another note, a HUGE thank you for all the generous donations during September Childhood Cancer awareness month. Caroline and her fundraising partners raised over $3,000 for cancer research! While the COVID lockdown has really put a damper on the ability to do large-scale, in-person fundraisers, cancer doesn’t lockdown or stop, so we are very grateful for the online support during these unprecedented times.  Thank you for the continued prayers!

All The Best,
The Lantz Family
#carolinestrong
#ftgf

Getting IV access, which she had to keep in overnight.

COVID test (required for sedation)

Expert at waiting in Radiology

MIBG Nuclear Injection Prep

MIBG Nuclear Injection

CT Scan - getting contrast injection

CT Scan

Waiting for the MIBG Scan

Always wants to drive herself into the OR/Scans!

MIBG Recovery

Wednesday, June 17, 2020

Results: 15-Month Check-Up

Last week, Caroline had her 15-month check-up at Monroe Carell Jr. Children’s Hospital at Vanderbilt. The immediate results of her numerous blood draw labs were just within average range, some slightly below, so we were anxiously awaiting the targeted Neuroblastoma urine tests (called HVA and VMA), which are typically the first indicator of a relapse.  These two test results always take a few extra days longer to come back, which is always so hard on us as nervous parents.  After a long weekend of waiting, we got the news this that both tests are in the normal range!  This is a great sign that there is still no evidence of Neuroblastoma in her body!  As you can imagine, we are very relieved, and so happy for her!

Real talk: we (Mark and Margaret) are really struggling with PTSD.  It's hard to return to “normal” when your life was obliterated by cancer; there is no going back to "normal."  So much of our life still revolves around the ripple effects of Caroline's diagnosis, treatment, current clinical trial and future hospital appointments.  We are doing our best to move forward every day, but we often find ourselves struggling mentally now more than when she was actually in treatment at the hospital.  During that time, our minds were on high alert and in "attack" mode - they were not fully processing what was happening.  Now we have the luxury of some time to think and process.  Cancer is never “over” or “behind us." We seem to actually suffer more now from “scanxiety” in the weeks leading up to her appointments, as well as some time after...even when the results are great news...than when she was in the thick of it.  So, next up in September, Caroline will get a CT Scan, MIBG scan, blood work, hearing tests, EKG, echocardiogram and more targeted urine tests.  

Thank you for all the continued prayers, love and support!  It really does mean everything to us - as they say,  it "takes a village.” 


Caroline is still on the clinical trial (called DFMO) that requires her to take 6 pills daily.  Funded by BeatNb.org, the DFMO team is diligently and quite literally trying to find a cure for cancer; their work is groundbreaking.  BeatNb sent out an email today where Caroline is featured in the lab with Dr. Sholler, one of the leading Neuroblastoma doctors in the country.  This picture was taken during a trip to see her last summer, and Caroline was actually looking at live Neuroblastoma cells!  We pulled the below directly from the recent email...the facts are mind-blowing: 

New paper published shows encouraging results for DFMO treatment


DFMO is a treatment we hope stops kids with high risk neuroblastoma from relapsing, which we've helped fund clinical trials around for several years. A paper was recently published continuing to show encouraging results - you can read our full post here looking at the results. Here's the striking numbers:

Give this oral drug (with minimal side effects) to kids, and 5 years later? 
95 kids out of every 100 is still alive.

Don't give them this drug? 14 of those 95 kids will instead be dead.

Give this oral drug (with minimal side effects) to kids, and 5 years later? 
85 kids out of every 100 is still in remission.

Don't give this drug? 
20 of those 85 kids will have relapsed.

We're working to get DFMO approved so all patients have access to it.

We still have work to do. At Beat Nb, we're working to make sure that EVERY kid with a cancer diagnosis gets a promise of "we know how to beat this." Thank you for helping make this a reality. 

Click here To Donate to BeatNb


Wishing everyone all the best!
The Lantz Family

Sunday, April 12, 2020

Happy Easter and Caroline is Officially 1-Year Cancer-FREE!!!

Although Caroline had her 12-month scans in early March, today (April 12th) marks the actual ONE YEAR Anniversary of No Evidence of Disease from her Stage IV, High-Risk Neuroblastoma diagnosis in 2017.  She is feeling great, and we've all been able to breathe a little bit more over the past 12 months.  Caroline is still taking DFMO, the clinical trial drug that reduces the chance of relapse in this type of cancer. That trial will end for her in April 2021.  We are very encouraged with both our results, and others that we follow on the study.  Thank you to beatnb.org for all the amazing work and support!

Thank you to everyone that has supported our family through this journey: our Franklin community, our amazing group of friends and neighbors, the Vandy staff and care team, local churches, our generous family, and all of the kind-hearted strangers (new friends!) from literally all over the world.  We could not have made it through this without all your prayers and assistance!

While we are beyond happy about Caroline's outcome and progress to date, we constantly think about the families that are still battling cancer every day, those that are just getting diagnosed today (especially during this dangerous time for immune systems and hospitals), and those that have lost a child to this awful disease.  Pediatric cancer is a scary, lonely and humbling experience for anyone that is touched by it, but we are doing our best to turn those thoughts and nightmares into action and progress towards advancing therapies and cures.  We have been actively trying to bring awareness and support to many of the organizations and professions that helped us, and many others, with cancer research and family support.

In March, Mark was invited to speak to 3 classes of Pharmacology students from one of the best Pharmacy schools in the country, Lipscomb University.  It was a great opportunity for us to share the Pediatric Oncology journey from a patient advocate's perspective, which is one part of the treatment protocol that cannot be taught in an academic textbook.  The students were very attentive and engaging; we appreciate that there is such a young and brilliant generation of future pharmacists entering the medical profession!

Additionally, over the last 12 months, Caroline and our family have participated in many fundraising and/or awareness efforts: for The Monroe Carell Jr. Children's Hospital at Vanderbilt, Make-A-Wish of Middle TennesseeThe Nashville Predators Foundation, Children's Miracle Network, Cooper Trooper Foundation, Angel Heart Farms, Love Your Melon, Brett's Barn, and BeatNb.  We are so grateful for every one of these wonderful organizations, and the incredible work they do for sick children and their families! **We've linked all their sites for more information and giving opportunities.

Many thanks for the love and support...and Happy Easter to all!
The Lantz Family

Easter through the years...2014-2020

Mark speaking to Lipscomb Pharmocology Students

April 12, 2019: No Evidence of Disease!

Friday, March 13, 2020

Results: One-Year Scans

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

Caroline being injected with MIBG radioactive contrast.

We Love Vandy!

Audiology test - she is showing signs of mild hearing loss, so we will re-check in 3 months.

 Waiting...

CT Scan 

 #carolinestrong

 Peace out! Walking herself back to the MIBG Scan.

 Fresh, 3-month supply of DFMO.

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!

Super Fan

 Buddy from Angel Heart Farms

Twins

 Family

 Amazing!

 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

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
#ftgf











A special video message from Caroline!