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

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
#carolinestrong
#ftgf

First day of Kindergarten!

~Proud Parents~

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

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!"

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
#carolinestrong
#ftgf

ICU

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

#carolinestrong

#ftgf

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
#carolinestrong
#ftgf

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 :-( 

HOME!!!

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
#carolinestrong
#ftgf

Peace Out!

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
#carolinestrong
#ftgf

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!

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

Rough Weekend / Stem Cell Transplant

We've had a very difficult few days.  The side effects of the high-dose chemo kicked in much quicker this round, compared to the last.  Caroline has been dealing with:

• high fever
• diarrhea with blood in stool (result of colitis and mucositis, as determined by an unplanned X-Ray and CT Scan late Sunday night to confirm)
• colitis
• musocitis
• nausea/vomiting
• loss of appetite (she hasn't eaten since Thursday, and is getting all nutrition through an IV) 
• severe abdominal pain
• leg pain

Although the transplant/oncology team warned us that this transplant would be harder than the first, we were not really prepared for how badly it would get, and how quickly...and we haven't even seen the worst of it yet.  Caroline is already on a Dilaudid PCA, which is administering continuous pain medication, as well as countless other medications, scheduled around the clock.  Other than the actual diagnosis, these have been the hardest few days since November 2017, when she began her treatment protocol.  As of today, she officially does not have any white blood cells or ANC/neutrofils (immune system), which is why we expect her condition to worsen over the next 7-14 days, before it should begin to recover from this awful stretch.

Around noon today, Caroline received her 2nd stem cell transplant.  The stem cell transplant helps her body rescue itself from the high-dose chemo.  Without this rescue, she would not be able to recover from the high-dose chemo.  The process itself, as mentioned in the post about the 1st stem cell transplant back in May, is very anti-climactic...the frozen cells are brought to her room and thawed bedside, inserted into a syringe, and slowly pushed through her central line over about 15 minutes.  The process is not painful, but it does smell like creamed corn in the room for a couple days, which is weird.

As always, the hospital staff does an amazing job of explaining every process to Caroline, and is always looking for ways to make her comfortable and happy.  Transplant day is a very big deal around here, so they really do it up!  She got signs, toys, and music therapy during the whole process...it really made her smile, which always makes everything easier to watch.  Words do not do justice to the love and kindness that is shown to Caroline and our family every time we're at Vanderbilt; this place, and more importantly...the people, are truly amazing!

Thank you for your continued prayers, specifically for her comfort during the next week, and our family's emotional state.  This just plain old sucks.

Hanging in there,

The Lantz Family

#carolinestrong

#ftgf  

Rough weekend.

Full-service bed ride to CT Scan. 

CT Scan

Awesome door sign made by Child Life Services volunteers!

Caroline's own stem cells to the rescue!

Actual stem cell transplant.

Daddy and Caroline with one of her favorite gifts in the bag today...a blow-up Unicorn head...LOL!

Chemo Complete! (Hopefully FOREVER!)

Today was the last day of chemo for this round (and hopefully ever!)!!!

So far, Caroline has been in pretty good spirits...she is still eating and drinking a little bit, playing with slime, doing art, and even got out of bed to do some music therapy.  Nausea, vomiting and diarrhea are currently her biggest side effects, so she is on a few medications to help with those.  We expect the next few days to get progressively worse, as her body continues to react to the high-dose chemo.  Although she is eating a little, the doctors have started Caroline on some nutritional supplements via an IV line and her NG tube.  The next big step is the stem cell transplant, which is scheduled for Monday, followed by approximately 3 weeks of inpatient recovery (again, due to the high-dose chemo side effects).

Andrew is currently enjoying 2 weeks of fun on vacation in Baltimore with family. Yesterday, thanks to a very generous friend, he got to attend Day 1 of Ravens Training Camp 2018.  He had a blast and got so many collectibles, which he said he wants to share with his little sister when he returns!

Mom and dad don't sleep very much these days...we're still struggling to deal with all of this mentally - the long and exhausting treatment protocol, what's still ahead, and being separated from each other constantly.  That being said, we cannot express enough how much we appreciate the visits, outreach, love and support from our friends and family.  We are very thankful we don't have to go through this alone...Caroline and her army of supporters are strong, so we must stay focused on that, even though it's easier said than done.

Team Lantz
#carolinestrong
#ftgf

Goofy time with music therapy.

 Training camp with Pop-Pop.

Cousin fun!

Thank you, MP, for always decorating Caroline's room every time we've been admitted...we love you!

Day 1: High-Dose Chemo

Today at 7am, we were admitted for Caroline's first day of high-dose chemo.  We had a very stressful and adventurous start to the day...to summarize:

1. Last night, we got a call that Friday's echo-cardiogram showed that her central line may have moved internally, and would require an early morning X-ray to confirm; if it had moved, it would require surgery to repair.  Caroline wasn't able to eat/drink after midnight last night, just in case.  We were extremely worried about her having to endure another surgical procedure right before high-dose chemo, which is already rough enough.  Thankfully, the X-ray showed that all is normal, and we were able to start chemo on time.
2. Unrelated to the scare above, during the first full hour of chemo, we noticed that Caroline's central line was leaking blood onto her bed.  We immediately called the nurses. ..they paused her chemo, and moved both chemos to one line.  They found a cut in her left-side line, and luckily, the surgery team was able to fix it bedside...fascinating to watch (kind of like fix-a-flat tire patch, with super glue).
3. FUN NEWS: Caroline lost her first tooth today at exactly 2:30pm (aka: toof hurty...haha...dad joke)!!!  She was so proud and excited, and has been telling anyone and everyone that passes by!

Caroline will receive 3 different types of chemo for the next 3 days, and then 2 types of chemo on the 4th day (Thursday), followed by a stem cell transplant on Monday (7/23).  We expect to be here for the next 30 days or so, recovering from this sub-lethal dose of chemo.

Thank you very much to everyone that donated Postmates gift cards for hospital meals - they are a huge help!  We appreciate all of the generosity and prayers you've sent our way!

Much Love,
The Lantz Family
#carolinestrong #ftgf

Chemo cocktail...

 Waiting for the X-Ray

Hug the X-Ray Machine!

Slice in central line.

Bedside line repair.

Playing babies while getting chemo!

Lost her 1st Tooth!!!