Monday, August 27, 2018

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

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

Taking Andrew to the bus stop this morning!

Thursday, August 23, 2018

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

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...

Friday, August 17, 2018

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

Thursday, August 16, 2018

First Day Kindergarten (Homebound Instruction)

Today was Caroline's first day of homebound instruction for Kindergarten!  She met her new teacher, Ms. Elise, and they had a great morning discussing the upcoming year!  Caroline will take classes at home (or in the hospital) a couple days a week, as she is able medically and physically.  She will also have a homeroom class at Trinity Elementary that will be including her and rooting for her from afar.  She is very excited to learn and grow with Ms. Elise!

Still no dates from Cincinnati...

Lantz Family

First day of Kindergarten!

~Proud Parents~

What a difference a week makes!  Last Thursday in ICU...this Thursday, Kindergarten!

Tuesday, August 14, 2018


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

Resting comfortably on the couch at HOME!

Monday, August 13, 2018

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

Trying some "real" food last night!

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

Saturday, August 11, 2018

Back on Oncology Floor

Caroline was moved back to 6A from the ICU at 5pm today!  Her blood pressure is stable, she isn't requiring oxygen, and she is currently resting with IV fluids and pain control medication. She will start NG tube feeds tonight and hopefully start drinking water or juice again soon.  She will be tested daily via blood cultures to make sure the bacterial infection is exiting her system, which is the first step to being considered for discharge next week.

Although she's made great progress, another issue popped up right before we were being transferred out of the ICU: one side of her double lumen hickman line (central line) is clogged and not flushing at all.  We are awaiting the surgical team to assess and see if it can be fixed bedside (or magically clear up!).  We're told that these types of clogs typically are related to bacteria clinging to the inside of the line, or possibly a blood type clot/obstruction in the line.  We will keep this blog updated when we find out the actual cause and resolution.  Please pray that this can be resolved without having to replace the entire line, which would require sedation and surgery.

We are all completely zapped...mentally and physically...and need a little stretch without any more surgeries, setbacks or surprises.

Lantz Family

Friday, August 10, 2018


Caroline was moved to the ICU last night for very low blood pressure and oxygen numbers.  Her body is having a tough time fighting off multiple viral and bacterial infections.  She has a fever and pain all over her body, but mostly is complaining about her back, legs and stomach (probably from infections and counts recovering).  She is not allowed to eat or drink until her she is no longer on IV blood pressure medication (Norepinephrine). She is currently stable but not very comfortable.

We will keep everyone updated on this blog as we get more information.  Thank you in advance for the continued prayers and positive thoughts!

Team Lantz

Thursday, August 9, 2018

Back in Hospital / No call yet from Cincinnati Children's

Caroline was admitted back into Vanderbilt this afternoon for fever, extreme nausea and pain (back, belly, legs).  They will run some tests this evening to try and determine the causes of these symptoms.  Additionally, we are still awaiting an initial call from Cincinnati Children's to discuss the planning and timing of the upcoming Proton Radiation treatment.

We will keep the blog updated as information comes in regarding both this admission, and plans for radiation treatment in Cincinnati.

Thankful for any and all prayers,
Lantz Family

Tuesday, August 7, 2018

Proton 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

If you would like to donate, click here:

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 :-( 

Monday, August 6, 2018


Caroline was discharged today after 21 straight nights in the hospital!  This is earlier than we expected, so we are EXTRA thankful to be sleeping in the comfort of our own beds again!  She came home with a couple medications that still need to be tapered off, as well as NG tube feeds...but as she feels more like herself, we're hoping everything falls back into place. 

We should have another update tomorrow about the next step (radiation) in this very long and grueling process.  Caroline has been a superstar so far - we're truly blessed!

Much appreciation for all the love, prayers and support!!!

Lantz Family
Peace Out!

Wednesday, August 1, 2018

Progress Update

Caroline has incrementally started to recover from her high-dose chemo (which ended on 7/19).  She is starting to sit up in the bed/chair, is doing some music and art activities, and she is talking again!  She was able to get off oxygen, and has been weaning off her IV nutrition, and transitioning to formula feeds through her NG tube (she still is not eating solid foods, but that will come in time).  She also has not had a fever in the last 48 hours, and she has reduced the number of pushes on her pain medicine button (self-weaning), which is also very promising! We are hopeful that this progress continues.  Caroline's white blood cell count/ANC (aka: immune system) is starting to appear, so we're hopeful she's turned the corner and is on the rebound!

Thank you for the continued prayers and support,
The Lantz Family

Finally sitting up on Tuesday morning!

Healing rest.

Reunited with Andrew on Sunday (7/29) - they were both so happy!

Nona and Papa are here for a week!

She practically launched out of bed when she saw Papa!