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
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



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



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

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
#ftgf








Tuesday, June 18, 2019

Caroline Clinical Update / Vanderbilt Ambassador

Caroline had 2 visits to Vanderbilt in the last 3 days. On Friday, she had a scheduled monthly clinical visit, and today, she visited as an Ambassador of the hospital to help open the brand new 10th Floor!

Clinical Update - All of her blood tests and urine makers (can aid in early detection of a relapse) looked great, and the doctors are happy with her current level of health. She will return to Vanderbilt in July for her 3-month post-treatment MIBG and CT scans, as well as a full day of labs and clinical testing.

Giving Back - She always has a fun time representing Vanderbilt in any way she can!  Caroline was able to tell her story, and tour the new floor, which will take care of young patients just like her for many years to come.  The video she worked on today should be published in the fall and we will certainly share when available. We are very grateful to the Carell family for being so generous and supportive of Monroe Carell Jr. Children's Hospital at Vanderbilt, as well as all of the other donors that made the expansion possible.  It's a true blessing to have access to the kind of care that saves lives so close to home!

Much Love,
The Lantz Family
#carolinestrong
#ftgf


Sunday, June 2, 2019

Caroline's Make-A-Wish!

We just returned from Caroline’s Make-A-Wish trip to the Cayman Islands! She originally picked a trip to the Macy’s Thanksgiving Day parade, but because of the timing of her treatment last November, she picked an alternate...riding ponies on the beach...and much, much more!

The Cayman Islands were gorgeous, and we’re so thankful Caroline is healthy enough to travel and truly enjoy the water, as well as everything the Island had to offer. We will let the pictures do the talking, but two very special shout-outs to those that made this all happen:

~Franklin Girls Cotillion: they raised the funds to sponsor the trip! What an amazing organization led by very kind and generous young ladies; we hope Caroline grows up with the same servant heart.

~Make-A-Wish of Middle Tennessee: They really do make wishes come true! Everything went off without a hitch!

Thankful for so many things, but especially time together relaxing as a family!
Team Lantz
#carolinestrong
#ftgf


Living her best life!

One the way to the Grand Cayman Islands - so excited!

Snorkeling in the crystal clear water

Cayman Turtle Center

Sunset

Girls' Pool Day



Horseback riding along the ocean


Stingray City

The kids discovered (virgin) Pina Coladas while we were there... 

Oceanfront dinner on the last night

Jet-skiing with Daddy


Stand-Up Paddle Boards





Starfish Alley



Thank you Make-A-Wish and the Franklin Girls' Cotillion for an amazing vacation!

Friday, May 17, 2019

Clinical Trial Update

Caroline has officially completed her first month on the DFMO clinical trial drug, which is hopefully going to significantly reduce the risk of a relapse.  She had a clinic appointment this morning, and her labs looked great!

It's been a really fun month for Caroline to be a "normal" kid, and for us to spend a lot of time together doing things we haven't been able to do as a family in the past 19 months.  Some highlights include:

- getting to go to "real" school and ride the bus...even go on her first field trip
- losing (another) front tooth
- taking swimming lessons and being able to get back into the pool
- visiting the "American Girl" doll store for the first time
- being able to finally go into a movie theater (she saw "Penguins")
- Going to Andrew's baseball games
- 3 Easter egg hunts
- Preds Playoff Game
- Franklin Main Street Festival
- Play dates and the park with friends
- Walking as an ALUMNI in the Rally on the Runway Event, where she was interviewed and created original artwork that raised $7,500 for the foundation!

Other than one day in the ER after catching a virus 2 weeks ago, we've really had an awesome month.  Her hair is growing back quickly, and relative to what she's been through, the 6 DFMO pills per day that she needs to take is not a big deal for her. 

Assuming all goes well, Caroline will go back to clinic in a month for a check-up!  It's a surreal feeling to be on the other side of that daunting and devastating treatment, but it makes us so grateful for each day.  We feel so thankful, blessed, relieved, and happy to be able to look ahead. 

Thank you for the love, support and prayers!
The Lantz Family
#carolinestrong
#ftgf

Rally on the Runway 2019 - Holding up her 2018 Rally Card

Field Day at school

Easter 2019

Friday, April 12, 2019

Scan Results




Scan results showed: No Evidence of Disease!!! Thank the Lord!

Next Steps:

  • Enroll in DFMO clinical trial drug study which has (so far) proven to significantly decrease the relapse rate (which is high for Neuroblastoma)
  • Labs/Clinic check-ups monthly (or as needed in between)
  • Full panel of scans in 3 months (July) to check for evidence of disease.

We are hoping to be able to transition her into school starting next week, so she can finish out kindergarten at Trinity Elementary!

THANK YOU doesn’t seem like quite enough, but, THANK YOU for all the prayers, love, and continued support over these long 17 months!

The Lantz Family
#carolinestrong

#ftgf

Monday, April 8, 2019

Final Week of Standard Treatment / "Scanxiety"

Caroline is finishing up the last few days of her 6th Round of Immunotherapy...the final round of "Standard Treatment Protocol" for Stage 4, High-Risk Neuroblastoma. It has taken 17 LONG months to get here. She will take her final dose of oral medication on Wednesday evening, right before bedtime, and then get ready for a long day of testing on Thursday.

Busy week ahead!
  • Wednesday: MIBG Radioactive Injection, EKG, Hearing Test, Clinic Visit/Labs
  • Thursday: Sedated for hours to complete a CT Scan, MIBG Scan and a Bilateral Bone Marrow Biopsy
  • Friday: Clinic visit to find our scan test results and consult with Caroline's medical team to determine next steps. 
Since Caroline's diagnosis, our family has learned to live with a heightened sense of "anxiety" on a regular basis.  However, this week in particular, we are all beyond anxious.  It's been dubbed "scanxiety," and it's definitely a REAL thing.  We are asking for specific prayers for some sense of peace, a safe round of test prep/tests, and of course a NED (no evidence of disease) report on Friday!

We will post an update on this blog as soon as we can.

Thank you for your continued prayers and support; you all have really pushed us along this journey!
The Lantz Family
#carolinestrong
#ftgf

First time back in a pool since 2017!

Friday, March 29, 2019

Immunotherapy Round 6 Underway!

Caroline had her weekly clinic visit to check blood counts and they were good enough to move onto the 6th, and final, round of Immunotherapy! She will take oral medication twice a day for the next 2 weeks, and the final day of her Neuroblastoma Standard Treatment Protocol will be April 10th. She is scheduled to have CT and MIBG progress scans on Thursday (4/11) and we hope to get the results on Friday (4/12).  As always, we will update the blog with results asap.

Caroline is feeling energetic right now; she has been able to do schoolwork at home, as well as spend quality time with family and friends. We are still hopeful that she will be able to go to her elementary school sometime in late April!

We have had requests for #carolinestrong slouchy tank tops for summer, so we relaunched a brief campaign; click here if you would like to order those or the other t-shirts.

Thank you for all the continued prayers, support and well-wishes!

All the best,
The Lantz Family
#carolinestrong
#ftgf

Wednesday, March 6, 2019

Predators 365 Foundation / Clinic Update

Caroline had a weekly clinic visit today for blood work and an overall check up.  Her numbers were mostly good, but her ANC keeps dropping, and is a little lower then we would like at this point.  The low number could be registering because of a common cold, or even side effects of the oral medications she is currently taking as the last portion of Round 5 (of 6) of Immunotherapy.  For now she will continue weekly check-ups until her progress scans are scheduled in mid April.

We want to say thank you to Pekka Rinne, The Nashville Predators, and Vanderbilt Children's Hospital, for always doing so much to support children who are in treatment!  We got to attend a Preds game last night in one of the suites sponsored by Pekka Rinne...who helped with an awesome Preds win in an OT shootout!  After the game, we were invited to go down to the locker room area and meet with some players.  It was so awesome to be able to congratulate and thank them for all they do for the community!  We are very grateful that they take the time to give back so graciously, especially after every one of these physically exhausting NHL games!

Chugging ahead,
The Lantz Family
#carolinestrong
#ftgf

 GO PREDS!

 Superstar Goalie - Pekka Rinne!

Fun visit with Ms. Kristen and Ms. Rhonda