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!

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!

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

Home for 48 Hours ~ Snowman 365

Caroline was discharged today after a relatively uneventful week of inpatient admission for her IL-2 infusion.  Her only side effects this week were: mid-grade fever, nausea and some pain/discomfort, all of which were managed effectively by medication.  She was feeling so well today that she was playing football for a few minutes this afternoon with her brother and friends in our yard!

We will be re-admitted in 2 days (Monday) for a much harder tandem round of Unituxin and IL-2 infusions (click here if you want to learn more about the antibody and side effects).  We expect this coming week to be very difficult on her body; it's apparently harder than the first round and she will again need to be on a Dilaudid pain pump for the entire week-long stay.

Today, November 24th, marks the 1 year date since Caroline was officially diagnosed at Vanderbilt, with Stage 4 High-Risk Neuroblastoma.  We are now one year into a (minimum) 17-month treatment protocol, and are very grateful that Caroline has responded relatively well, so far, to a very aggressive cancer that has an overall survival rate of around 35% for her diagnosis.  We continue to pray that this last part of standard treatment, Immunotherapy, knocks out the rest of the active cancer in her body.  After discharge today, we went back to the exact spot where Caroline wanted her picture taken 1 year ago, as we were leaving the hospital after just learning about her diagnosis (she did not know at this point)...Frosty and Caroline are still standing strong together!

Thank you, again, to all of our friends, friends-of-friends, family, and even strangers, who continue to support our family through this long, hard journey against a very nasty cancer,  The meals, donations, prayers and words of encouragement have been and absolute blessings during a very unstable time in our lives.  It truly has been "the best of times, and the worst of times."

And yes, we did eat Thanksgiving together as a family, albeit on top of the Wilson's Yeti cooler in the corner of a hospital room! Very thankful for the Olivos/Hagues/Stanfords, who went out of their way to make us homemade food on Thursday...it was much better than eating at Subway (no offense Brent), which was the only place open at Vandy that day!

Much Love!
The Lantz Family
#carolinestrong
#ftgf

Same snowman, same strong girl!

A commemoration pie (homemade by Andrew!), and a video message from Caroline...

Thanksgiving Dinner

"Nurse mommy" changing Caroline's central line dressing.

Sending out some positive vibes!!!

Weekend in pictures / Halfway through Proton Therapy!

It was a great weekend in Ohio!

Saturday morning started downtown, with a "Go the Distance" 5k Walk to benefit Cincinnati Children's Hospital!  After the race, everyone was invited into Paul Brown Stadium for fun and games!  Caroline's Radiation-Oncologist, Nurse Case Manager and Child Life Specialist were all there walking with the Proton Team, and it was fun to see them outside of the hospital.  Very memorable event!

Sunday morning included a trip to the Cincinnati Zoo, and it did not disappoint!  We saw the infamous "baby" hippo, Fiona, watched kids feed the Giraffes, and even measured Caroline's weight in insects!  Great weather, great zoo, great time!

Sunday ended "family-dinner" style!  We have been fortunate enough to befriend the friends of a friend from Nashville, and they invited us over to their house for a BBQ and s'mores.  Caroline had a little playmate; they ran around almost the whole time, and even caught some frogs.  Everyone has been so kind and welcoming...we feel so loved!

Caroline completed her 10th Proton Therapy treatment this morning, so she is officially halfway through! 

Thank you for your continued prayers, support and showering of love!
The Lantz Family

#carolinestrong

#ftgf

Bottoming Out / Pre-School Graduation Day

As we often mention, the community support we've received during the last 8 months has been a perpetual source of love and gratitude.  Today, we would like to give a very special thank you to The Academy of McKay's Mill.  The Class of 2018 is graduating tonight, and we really wish Caroline could be there in her little cap and gown, just like her friends, and just like her brother, when he graduated from The Academy in 2013.  The Academy is where Caroline spent every working weekday since she was 16 weeks old...it was her home away from home, and she loved her teachers and friends just like they were her family.  Other than telling Caroline she had cancer, telling her she couldn't go back to school and see her friends/teachers was the hardest conversation we've had with her.  Although Caroline never went back to school after she was diagnosed, we've never felt like she actually "left."  Our Academy family has been steadfast in their inclusion and support for Caroline - always checking on her, sending cards, videos and even homework!  We were also included in the formal graduation photos, and then were surprised with a special insert for Caroline within the graduation program, which literally brought us to tears.  Despite the fact that Caroline won't be able to formally graduate with her friends, having a picture of her in a little cap and gown, from a place that helped raise her, is truly priceless.  Thank you, Academy of McKay's Mill - we love you all!     

Hospital Update:
Right now, Caroline is having her most difficult stretch since starting the treatment protocol back in November.  She has extreme mucositis through her entire GI tract (worse than during her last transplant), which is causing her to struggle with getting enough oxygen.  She is now on a nasal cannula, which is giving her the oxygen assistance she needs.  The other major issue she's having is blood and intestinal tissue in her stool, also as a result of her GI tract being stripped raw from the high-dose chemo.  Needless to say, it is VERY painful for her; she is on continuous Dilaudid/pain medication (already more than the last transplant), as well as a patient-controlled button, which she needs to use frequently.  The mucositis has also moved into her throat, which causes her so much discomfort that she doesn't want to talk; she is mostly using hand motions and a bell to get our attention.  We expect her to struggle like this -- or worse -- for the next 5-7 days.  She received both red blood and platelet transfusions today to help get her numbers up before we head into [what we expect to be] a very challenging weekend.  Please continue to pray for her comfort and a speedy recovery.

Team Lantz
#carolinestrong
#ftgf