Proton Radiation Complete / Home

We are home from Cincinnati and all together!

 Running through the celebration "tunnel" after her last treatment!

Ringing the chimes to let everyone know she just completed her last treatment!

The Proton Team!

Reunited at last!

Thank you for the continued prayers and support.  This month apart was long...and the road ahead is long, but for today, we celebrated!!!

Team Lantz

#carolinestrong

#ftgf

Proton Radiation Days 15-19

What a week!  We've done so many fun things since the last update, and lots of pictures to show for it!  Caroline has successfully completed 19 of her 20 scheduled Proton Radiation treatments today, and she's actually feeling better than she did last week...minimal nausea, minimal pain, and LOTS of energy!

Saturday morning started with a play date!  Here is Vivian, another sweet 5 year old that is also battling Stage 4 Neuroblastoma, like Caroline.  We met her through the Proton Center, and have been able to see her several times.  Please keep Vivian in your prayers!

Saturday ended with a visit from one of Caroline's favorite "night nurses" from Vanderbilt, Valerie.  She and her husband moved back to Ohio...we miss her so much, but were so excited that she was able to come over and play some games!

On Sunday, cousin Victoria came to visit for a few nights...she's an AMAZING chef, and let Caroline help her in the kitchen.  We loved having her here with us!

Monday required a blood transfusion...Caroline taught Victoria how to meditate...hard to not laugh when she's wearing a deer costume!

On Wednesday, we went for ice cream with another fun friend, John, who is also fighting Stage 4 Neuroblastoma.  Please keep him in your prayers, too.

Graeter's "famous" ice cream!

Wednesday night was super special...our new friends, Miss Sue and Miss Jill, came over to help Caroline decorate some cakes.  They created a hulk fist out of fondant...the cakes turned out awesome, and were so thankful for the new friendships!

Thursday included a "behind-the-scenes" Proton Therapy Tour.  It was really a mind-blowing experience, and we feel very fortunate that Caroline is able to receive such cutting-edge treatment, even though it's requiring our family to live apart for a short time.  

Until Monday, peace out Proton!

We are really excited to head home on Monday, but have truly had an amazing experience in Ohio!!!  We have been welcomed and embraced by this community (neighbors, friends-of-friends, random people that turn into new friends, the hospital team, etc), and luckily, for the first time in a long time, Caroline has felt really great!  

Thank you for your constant prayers, love and support for our family.

The Lantz Family

#carolinestrong

#ftgf

Proton Radiation Days 10-14

Caroline finished her 14th of 20 total Proton Radiation treatments today!

To date, she has minimal side effects (just nausea/vomitting and some nerve-related leg pain), and is doing a great job with the daily routine.  She loves seeing her Proton team every morning, and so far, the experience at Cincinnati Children's has exceeded expectations!  We are very thankful for everyone in the medical field that have dedicated their lives to helping others; it's truly a gift. 

Caroline has been able to continue her home-bound schooling a few days a week while we are here, thanks to a very generous new friend we met last week!

Mark came to visit for his birthday - so much fun celebrating, although we really missed Andrew.

While in town, Mark and Caroline were able to go to a Flashes of Hope photography session (Margaret and Caroline have done this before)...to our surprise, Caroline's picture from her Vanderbilt session earlier this year was spotlighted on the Cincinnati Chapter table!  They told us that all 55 chapters (nationally) are probably using her picture in their display and marketing materials!

On Thursday, Caroline pulled out her NG Tube, and is going back to taking her daily medication orally.  The tube was rubbing on her nose and causing some redness and discomfort so she decided it was time to get rid of it all together; she hasn't needed to use it for feedings in over a month.  We are very proud of her!

We are BEYOND thankful for our friends who have helped us with Andrew, Hank (the dog), and our home, while we continue to juggle and navigate this chapter of a very long and difficult process.  We would fall apart without this amazing army of love and support!

Again, thank you all for the prayers and encouragement throughout this journey.

Much Love,
Team Lantz
#carolinestrong
#ftgf

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

Proton Therapy Days 5-9 / God-winks

Caroline has now completed 9 of 20 Proton therapy treatments, and is still hanging in there!  The only side effects she's been feeling are nausea, some leg pain, and trouble sleeping.  It's VERY hard on our family to be this far apart, but despite it all, Caroline still has a ton of energy, and it's unfolded to be a really great week, with some pretty amazing God-winks...

An adventure trail walk in Sharon Woods Park to meet up with an old friend of Margaret's cousin...she was the sweetest!

Nona came for a visit!  Quality time, games, "prizes" and infamous Dewey's Pizza!

Bullseye Cake Pop at Target Starbucks for the win!

EWA Cubs won their first game of the season...and their tribute to Caroline is so touching!

God-wink of the week: We were a part of a chain reaction of kindness in honor of a girl named Maya, who lost her battle to cancer.  Her 15th birthday would have been on Wednesday, 9/12, and people were going around town doing random acts of kindness in her honor.  Caroline was the recipient of THREE of these acts!!!  It all started in Target, when Caroline was picking out a "prize" from Nona for being so brave...a lady came into the aisle and told us she was doing a "random act of kindness for a friend..." and handed over a gift card.  Caroline gave her a #carolinestrong bracelet, and everyone was emotional...THEN Margaret got an email from a friend of the lady who gave the gift card in Target, and she wanted to bring Caroline some toys she intended to bring to the Children's Hospital as her act of kindness...THEN someone bought us an UberEats giftcard for dinner and one of their random acts of kindness.  Although we never had the privilege of meeting Maya, we have been blessed by her and her friends.  You can read all about her and the "kindness cards" by clicking here.  We will definitely be paying this forward!!!

With lots of love,

The Lantz Family

#carolinestrong

#ftgf

Day 1 of Proton Radiation - Cincinnati Children's

1 down, 19 to go!!!  Day 1 of Proton Radiation Therapy is officially in the books.  Other than needing a blood transfusion after radiation, the day went as smoothly as can be expected. 

We arrived at the Proton Therapy Center early in the morning to meet with Caroline's prep team (nursing, anesthesia and radiation-oncology).  After getting her morning vitals and being evaluated by the doctor, Caroline walked back to the Proton Radiation room, got settled, laid down on the table, and was administered IV sedation medication.  Approximately 30 anxiety-filled minutes later, we were escorted back to see Caroline in the radiation recovery area.  She was already fully awake and acting like her normal, silly, loving self.  In fact, the nurse said she has never seen a child "come to" as quickly as Caroline did today!  We are glad that she was able to bounce back so quickly after the treatment and sedation. 

Caroline required a red blood cell transfusion due to low hemoglobin numbers, which took about 4 hours, after which she was released to relax at home (our short-term housing).  The rest of the today will be spent working on Kindergarten homework and resting in the cool air-conditioning, to escape the unseasonably HOT September Ohio temps.

We are so very appreciative of all the prayers, kind words, messages, meals, UberEats gift cards, donations, and most of all love and support from so many near and far.  It means the world to our family during this very disruptive time in our lives.  

The Lantz Family

#carolinestrong

#ftgf

Arriving at the Proton Therapy Center.

Walking herself back into the room. 

Distraction while they prep for anesthesia is the best!

Sedated and ready for Proton Therapy!

In the playroom while getting blood...great view!

Cincinnati Proton Radiation Start Date: 9/4

Today we received confirmation that Caroline will start Proton Radiation Therapy at the Cincinnati Children's Hospital - Liberty Campus Proton Therapy Center starting on Tuesday, 9/4.  We plan on "moving in" to our monthly apartment rental (3 miles from the Proton Center) on Labor Day, 9/3, to get ourselves set-up for the next 4.5 weeks of outpatient treatment. 

In the meantime, Caroline will do her school work, go to the Vanderbilt clinic on Friday, and we will enjoy this last week together as a family.

We appreciate the prayers and support!

HUGE thank you and shout out to our awesome friend, Anneliese, for creating some new logos for Caroline!

Lantz Family
#carolinestrong
#ftgf

New t-shirts available through Friday: click here to purchase.

Taking Andrew to the bus stop this morning!

Proton Therapy / Cincinnati Update

Caroline and Margaret got back late last night, after 2 full days of doctor's appointments, consultations, scan, x-ray and general Proton Therapy education and prep.  Information overload, to say the least. 

We do not know the exact date that Caroline will start Proton Therapy, but they are shooting for sometime next week (Wednesday or Thursday), or at the latest, September 4th.  

We have secured housing and will be staying at an apartment very close to the Proton center, which is very helpful, since Caroline may be nauseous after being sedated every day before she gets radiation.  She will receive a total of 20 outpatient treatments, and we hope to wrap-up late by September or early October.  Mark and Andrew will travel up to Cincinnati as work, school and baseball schedules permit.

Some friends have been asking for Caroline Strong t-shirts, so we have re-launched the campaign with a new design.  You can purchase or just check them out by clicking here.

Thank you for all the love and support as we move into this 4th major phase of the High-Risk Neuroblastoma treatment plan.

Lantz Family

#carolinestrong

#ftgf

Proton Radiation machine! 

 Caroline was able to get up close to the machine and check it out!

Proton Therapy Center and Cincinnati Children's Hospital - Liberty Campus

Lobby of Proton Center 

Solid dab on luggage cart...

Enjoying the sunshine and fresh air!

Exhausted on the ride home...

Cincinnati - Part 1 / Clinic Visit Today

Today we (finally!) confirmed that we will be at Cincinnati Children's Hospital for 2-3 days next week to meet their Radiation-Oncology team, Oncology team and Anesthesia team, to get the planning scans and measurements needed for Caroline's upcoming Proton Radiation Therapy.  Once they have accurate measurements, they can put together the actual plan for Caroline's targeted areas of treatment and confirm a start date.  That planning process typically takes 7-14 days.

We anticipate returning to Cincinnati the first week of September to begin our month-long treatment.

We have loosely secured housing for the month-long stay (just need the actual dates to lock it up), so a BIG Thank You to all of those that offered guidance on where to stay, etc!

Caroline had pretty good numbers at clinic today, and only required a platelet transfusion and an antimicrobial infusion.  The Vandy team is very happy with her progress and recovery from Transplant #2 and her complications last week.

Thank you for all the continued love and support!

Lantz Family
#carolinestrong
#ftgf

HOME!

We were discharged this afternoon thanks to some expedited work by Nurse Deanna!  Caroline did require platelets and a Neupogen shot before leaving the hospital today.  Other than her regular visits to the clinic, she will be resting and recovering at home until we travel to Cincinnati for Proton Therapy.  We still don't have any details or dates for that, but expect to hear by the end of this week.

Thank you for all the prayers and support as we re-group and re-organize ourselves back in our own space for the rest of this week!

Lantz Family

#carolinestrong

#ftgf

Resting comfortably on the couch at HOME!

Progress Update

Caroline is feeling better today and has started to eat and drink a little bit!  The clogged line issue from the weekend has been resolved without any surgical procedures, and her oxygen levels and blood pressure are back to normal.  We hope that she can be discharged within the next few days.  When she is allowed to go home, she will leave with a daily IV antibiotic that we will administer at home, through her central line, that runs for 14 days to ensure the infection is completely gone.

We have confirmation that Cincinnati Children's Hospital has received her transfer records, and we expect to hear from them later this week to schedule her Proton therapy.

Thank you for you all the vigilant prayers, especially during this scary ICU/infection experience.  We are also beyond thankful for the generosity that we've received in Paypal donations for the upcoming travel expenses.

So much appreciation,
The Lantz Family
#carolinestrong
#ftgf

Trying some "real" food last night!

Art with Aunt Joanna is the best!  Grumpy Cat and "Grumpy Caroline!"

Proton Radiation...in Cincinnati, OH...uggh

We had our radiation consult today at Vanderbilt.  The overall goal of radiation is to kill any remaining, or hard-to-see, cancerous cells in the main origination areas of a solid tumor.  Due to the location and complicated nature of Caroline's tumor, she requires a newer form of radiation called "proton radiation therapy."  Proton radiation therapy is a more targeted form of radiation, compared to the more common "photon radiation."  Proton radiation will also be safer for Caroline, hopefully causing fewer long-term side effects.

Unfortunately, there are no pediatric proton radiation therapy locations in the Nashville area (ironically though, there is one opening 2 miles from our house later this year, but because Neuroblastoma is so aggressive, she needs to start radiation asap).  The closest (and best!) proton therapy center for the type of radiation needed/area of her body is located in a suburb of Cincinnati, Ohio.  Cincinnati Children's Hospital is currently ranked #1 in the nation for pediatric oncology!  We do not have all the details yet, but within a few weeks, we will have to travel to Cincinnati, OH for the radiation phase.  Caroline will be receiving 20 radiation treatments, which are administered Monday - Friday (4 weeks, unless something unexpected were to happen).  Prior to the proton therapy, she will have to get planning scans and a mat that is sculpted to hold her body, so she can lay in the exact same position each day.  The radiation is performed under sedation, and is about a 2 hour-a-day process, start to finish, and is considered an outpatient treatment.  We are in the process of finding a clean, safe, isolated hotel/condo/airbnb for her to rest and recover each day.  All in all, we anticipate being in Ohio for about 5 weeks.   As mentioned, we don't have all the details at this point, but we will share those as they progress later this week.

This will be another unexpected and challenging balancing act for our family.  Andrew goes back to school this coming Friday (8/10/18), and Fall baseball is also starting up this weekend.  We will now have to plan to be separated again, without the option of quick visits to the hospital (like we've been doing, to try and keep some semblance of family togetherness).  Just like we've been able to do so far, we will figure it all out somehow, but this is certainly very mentally and emotionally draining...especially coming off the heels of her recent high-dose chemo/stem cell transplant inpatient stay. 

We appreciate all the kind messages of support, the calls and texts, etc.  For those that continue to ask how they can help, please see the donation link below.  In addition to the never-ending medical bills and expenses, we will now be adding travel, lodging and meal costs for the 5 weeks in Ohio to our list of unexpected expenditures.  We appreciate any and all support.  Thank you all!

Lantz Family

#carolinestrong

#ftgf

If you would like to donate, click here: https://www.paypal.com/pools/c/80FGIeu7k1

Waiting, waiting, waiting...

Caroline's little friend Molly's last radiation treatment at Vandy was today, and she brought in cupcakes to celebrate!  We were so excited for her! #mollystrong

"Sneak-a-peek" at school tonight...can't believe he's in 5th grade!

Carpool line pass has Caroline listed as a Kindergartner - wish she could be there with Andrew this year, instead of doing homebound instruction :-(